Winter Outing 2007 - Helping Hands Foundation

Transcription

Helping Hands Foundation
Newsletter
A support group for families of children with upper limb differences
Spring 2007
Winter Outing 2007
Reserve your spot Today!
2007 Summer Outing
July 15, 2007
Mass. Hospital School (Canton)
2007 Soccer Clinic
July 16, 2007
Gillette Stadium (Foxboro)
Items in this Edition :
Winter Outing 2007
Summer Camp Activities
Looking Back in Time: Part 4
“Little Fins” Support Group
Saving Summer—Mary Leighton
Giving the Gift of Self Esteem
HHF Star is Born
Rizzo Golfs at First Swing
First Swing Clinics
What an event! All of our wonderful families had a superb time
this year with many added activities, entertainment and speakers.
We started off our weekend with a new “meet the board” gathering for parents. Many thanks to our friendly board members who
attended this event: Bill Binnette, Chris & Owen Boyd, Peggy
Ganim, Nancy Soucy, Rob & Beth Morley and Patti Garofalo.
Many parents stopped by to socialize and get to know those who
help keep things running within our organization. We hope to increase parent and teen participation within our group by exposing
our members to the awesome work our foundation offers to so
many.
On Saturday morning, we were all
treated to a presentation by professional golfer, Michael Gibson. As a
teenager, Michael lost his left arm
above the elbow in a boating accident.
However, being an avid athlete, he did
not let this tragedy stop him from exploring new activities…one of which
was golf. He was soon hooked and
before long became a Certified Custom Fitting Instructor helping people
of all ages and abilities learn how to
improve their golf swing. Some of
his clients include people recovering
from strokes, polio and other developmental disorders like Downs
Syndrome and CP as well as fellow amputees. We are very grateful
to Michael for sharing his story and exploring the world of golf
with our HHF kids at their youth meeting and luncheon. We hope
he becomes a regular participant at our outings. Michael Gibson
can be reached at Harmon Golf, 168 Concord Street, Rockland, MA
02370; 806-942-7666. Much thanks to his wonderful assistant,
Ashley Parsons (aparsons@harmongolf.com) for helping to coordinate our day with this special guest!
(Continued on page 2)
Winter Outing 2007
(Continued from page 1)
Throughout the weekend, we had several other special guests join us. Eamon Joyce, a licensed mass a g e
therapist and
amputee,
donated
his valua b l e
time to
s h o w
HH children the
m a n y
benefits
of massage therapy on overworked limbs and joints.
Thanks to Eamon and his wife, Nancy, and son for
joining us. Eamon can be reached at the Winchester Hospital in Woburn MA or 781-756-4700.
Also, Maggie Doben joined us (with camera in
hand) to learn more about our wonderful children
and their families for her upcoming documentary
about physical differences. Her goal was to gain
insight so she can better teach about awareness in
her classroom and beyond. We look forward to
seeing the finished product in the near future!
Maggie can be reached at MaggieDoben@comcast.net.
Everyone
then enjoyed
a spontaneous “Kids
on
the
B l o c k ”
p u p p e t
show about
basic respect
for everyone
and their differences performed by mom, Kristin
Martell. This is a super way for children to learn
about many different disabilities and social issues
in today’s world. Kristin would be happy to share
with other parents how simple it is to add this program to your school’s curriculum. She can be
reached at KristinMartell@comcast.net. Additionally, throughout the day, we were visited by
Shriners Hospital (Debi Latour –
dlatour@shrinenet.org) and were given the opportunity to learn about upper-limb prosthetic options
and treatments. Thanks to mom, Amy Minkin, for
this suggestion and contact information. We
would also like to thank Bronk McConley who
came up from Shriners to talk about some of the
services they offer.
During the talent
show, we enjoyed the
first-ever performance by the new
“Helping
Hands
Band”. A music student at UNH and
HHF teen mentor,
Valerie Peters, did a
terrific job coordinating “It’s a Wonderful Life” for several of our HHF kids
with various instruments. With Valerie’s help and hard
work, we hope to
continue this tradition for many years to come. Thank you, Valerie!
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H E L PI N G H A N D S N EW S L E T TE R
Winter Outing Pictures
Fortunato Jewelers
If you are ever looking for jewelry, Gil Fortunato is the guy to hook up with at Fortunato
Jewelers. Their Toll free phone number is 888-345-4060 or check out their beautiful website.
Page 3
http://www.fortunatojewelers.com
Thanks again to the Fortunato Family for continuing
to support our winter raffle and Youth Group.
We appreciate it!
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Winter Outing 2007
We would like to once again thank Peg Ganim for
her continued help with our craft activities.
Special thanks goes to The Fortunato Family for
their continued support and donation of beautiful
diamond earrings, won by Dayna Waskiewicz.
Also, congratulations to Stephen Rizzo for winning
a scholarship to the ACA Summer Camp in Georgia
this July (all expenses paid)! Many thanks to The
Galvin Family for scoring the awesome sports tick-
ets to the Boston Bruins (won by Guilano Lin), New
England Patriots (won by Ryan Jefferson) and Boston Red Sox (won by Connor Beverly). What a
wonderful ending to a super day! We appreciate all
raffle donations made by our generous families and
their participation in this fundraiser. It certainly
helps us defray some of the costs for the weekend.
Our winter outing was jam packed with activities for
all to enjoy. Thanks to Nancy Soucy and Patti Garofalo for making it all happen!
Summer Camp Activities
A campfire, hotdogs, s’mores,
stars — all the signs show that it’s
time for summer camps. Timehonored activities such as horseback riding, swimming, and nature
walks become commonplace to
youths enjoying a nice day or week
in the woods. It’s also a time to
make new friends and to help adolescents with physical disabilities
understand that they are not alone.
So pick up those phones or fire up the computer
and make reservations for a summer of fun, adventure, and new experiences and friendships.
Amputee Coalition of America Youth Camp
attended camp in the past and have
exhibited strong leadership qualities. This summer residential program provides a socially stimulating environment where these
youths can meet others like themselves. There is a $500 fee for
camp, which includes travel expenses. The ACA will provide
scholarships to families that demonstrate financial need. For more
information on the camp, please
visit the Youth Activities Program
(YAP) Camp page on the ACA’s Web site at
www.amputee-coalition.org/youth_camp.html, email yapinfo@amputee-coalition.org, or call Derrick Stowell, ACA Youth Activities Program Coordinator, at 888/267-5669 x 8130.
Warm Springs, Georgia (July 18-22, 2007)
The annual Amputee Coalition of America (ACA)
Youth Camp provides youth with limb differences
(ages 10 to 16) four fun-filled days of educational
outings, team-building exercises, sports and opportunities to learn from peers and adult amputee
mentors. Starting in 2007, the camp will have a
junior counselor program for 17 yr. olds that have
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Adventure Amputee Camp
Bryson City, North Carolina
Sponsored by Adventure Amputee Camp, Inc.,
this camp is for children with limb differences
(ages 8 to 17) and is held in Bryson City, NC, at
Summer Camp Activities (cont’d)
the Nantahala Outdoor Center. There is a $25 registration fee, although this is waived for lowerincome families. Attendees must provide their own
transportation to and from the meeting locations
(Knoxville, TN; Atlanta, GA; Bryson City, NC).
Camp is being held July 11-15, 2007. For more
information, contact the camp director, Missy
Wolff-Burke, PT, at 540-545-7238 or e-mail her at
m w o l f f @ s u . e d u
o r
v i s i t
www.adventureamputeecamp.com.
be in Maine August 1-4th. The final session will be
held in Idaho August 23-26th. Some sponsorships
are available as well. For more information, call
Mary Leighton at 207/240-5762, or visit the Camp
Ability
Foundation
Web
site
at
www.campability.net.
Congenital Hand Camp – Hands to Love
Starke, Florida
Young amputees between the ages of 6 and 18 can
enjoy camp and challenges for four days. Activities include swimming, fishing, hiking, volleyball,
horseback riding, zip wire, ropes course and wall
climbing, just to name a few. The camp is held August 9 through August 12. There is a $5.00 registration fee which can be waived if needed. Sponsorships are available to defray the cost of the
camp. For more information, call Beverly Gryth at
434/293-9720, or Ed Hicks 434/243-4670,
434/263-5432 or email at meh8f@virginia.edu.
Hand Camp is a weekend camping experience for
children who have upper limb differences and their
families. It provides an opportunity for children to
try new exciting activities, to interact with others,
and to just be a kid. The camp is currently held one
weekend a year at Camp Crystal Lake in Starke,
Florida. The camp also provides opportunities for
parents to network and share their experiences. The
Camp was started by Dr. Paul Bell, and two hand
therapists, Ruthie Dell and Ginger Sterna. Hands to
Love provides a way for medical professionals,
families, and children with limb differences to learn
and grow. For more information, call (352) 2737382, e-mail the camp at H2Lhandcamp@handstolove.org, or visit their website at
www.handstolove.org/.
Camp Ability – Camp Ability Foundation
Camp C.A.M.P.
Rome, Maine, California and Idaho
San Antonio, Texas
Camp Ability was established in 2004 to provide
children with limb loss and their families the opportunity to network with other children and their
families, as well as experienced physical and occupational therapists, prosthetists, and patient advocates. Many young adults with limb loss will also
attend to share their experiences and provide the
inspiration and outlook to transform disability to
ability. Nature, sporting events, and arts & crafts
highlight daily activities. In 2007, Camp Ability
will have three sessions. The first will be held in
California June 20-23rd. The second session will
C.A.M.P. (Children's Association for Maximum
Potential) enables children with disabilities to thrive
in a recreational environment where safety and nurturing are primary. Camp C.A.M.P is a series of
five-day summer camp sessions for children with
special needs who may not be eligible to attend
other camps due to the severity of their disability or
medical condition. We also include activities for
campers' siblings without disabilities. Fees can be
waived or lowered by cost-sharing programs, sliding fee scales, and camp scholarships for lower-
Adventure Camp, Inc.
Middleburg, Virginia
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Summer Camp Activities (cont’d)
income families. For more information, call
210/292-3566, e-mail info@campcamp.org or
visit the C.A.M.P. Web site at
www.campcamp.com.
Camp Cheerful
Strongsville, Ohio
Children ages 5 and older with and without special needs can enjoy all that Camp Cheerful has to
offer in a day camp setting. Cheerful Day Camp
includes all the activities of traditional camp sessions, including swimming, horseback riding,
archery, nature study, sports, canoeing, and much
more. Cheerful Day Camp is offered in one-week
sessions, Monday through Friday, from mid-June
through mid-August. The camp day runs from 9
a.m. to 4 p.m., with extended care available from
7:30 to 9 a.m. and/or 4:30 to 6 p.m. Campers can
register for multiple sessions. For more information, call Tim Fox at 440/238-6200 ext. 23, e-mail
tim.fox@achievmentctrs.org, or visit the Web site
at www.achievementcenters.org/.
Camp Riley
Held at Bradford Woods, Camp Riley can be attended by young persons with disabilities, ages 8
to 18. The one-week sessions are divided into age
groups throughout the summer. Returning campers and first-timers look forward to time-honored
recreational activities – like swimming, horseback
riding and canoeing - and the opportunity to meet
others with similar disabilities, all in a setting tailored to fit their needs. Most importantly, campers
gain a sense of increased independence in a fun
and encouraging setting. For more information,
call Heather Perdue at 317/634-4474 ext. 112, email campriley@rileykids.org, or visit the Web
site at www.rileykids.org.
Camp Victory
Columbia County, Pennsylvania
Children who are chronically ill or physically disadvantaged need help and encouragement to cope
with their lifelong challenges. Recognizing the
sense of isolation and frustration these challenges
can bring to the children and their families, Camp
Victory was designed and built to handle their
special needs. At Camp Victory, partner groups
operating camps for chronically ill or physically
disadvantaged children can offer the greatest pos-
Indianapolis, Indiana
If you Need us…
Patti Garofalo
President
(508) 359-8491
President@helpinghandsgroup.org
Nancy Soucy
Vice President/Secretary
(508) 541-8373
Vp@helpinghandsgroup.org
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Peg Ganim
Treasurer
(401) 723-5814
Treasurer@helpinghandsgroup.org
Beth Morley
Newsletter Editor/ Family Directory
(508) 622-1021
Newsletter@helpinghandsgroup.org
Summer Camp Activities (Cont’d)
sible care, support, personal growth and pleasure.
In addition to the regular camp scene, activities
include casino nights, petting zoos, and talent
shows. Both weekend and weeklong sessions are
available. For more information, call 570/4586530, send an e-mail to fun@campvictory.org, or
visit the Web site at www.campvictory.org.
fully accessible setting. Day camps, residential
camps, and respite camps address the diverse
needs of children with physical disabilities. These
camps offer the full experience that comes with
camping, including sing-alongs, campfires, boating, nature walks, and arts & crafts. For more information, call 800/221-6827 or visit the Easter
Seals Web site at www.easter-seals.org.
Wonderland Camp
KidCamps.org
Rocky Mount, Missouri
KidCamps.org is one of the most comprehensive
directories of camps and summer experiences,
listing over 24,000 camps and summer programs,
with over 100 programs listed for children with
physical limitations alone. Other camps focusing
on disabilities include developmental disabilities,
diabetes, epilepsy, cancer, and speech, hearing,
and visual impairments. For further information,
call toll-free 877/242-9330 or visit the Web site at
www.kidscamps.org.
People of all ages and disabilities are welcome at
Wonderland Camp. The mission of Wonderland
Camp is to provide a fun, educational camp experience for people with mental and physical disabilities, to offer a respite from daily caregiving
for family members and healthcare workers, and
to provide and nurture a personal development
experience for volunteers and staff. For more information, call 573/392-1000, e-mail wondcamp@advertisnet.com, or visit the Web site at
www.wonderlandcamp.org.
National Sports Center for the Disabled
ADDITIONAL CAMP RESOURCES
American Camping Association
The American Camping Association is a community of camp professionals who ensure the quality
of camp programs. Their searchable database contains listings for camps that provide specialized
services for persons with disabilities. For more
information, contact them at 765/342-8456 or visit
www.campparents.org.
Easter Seals Camps
Winter Park, Colorado
For the past 34 years, the NSCD has offered children and adults with disabilities the opportunity to
participate in a variety of outdoor sports and recreational activities. Outdoor mountain recreation
is ongoing from mid-June to early September.
The summer program now includes mountain,
tandem, and hand-crank biking, hiking, in-line
skating, therapeutic horseback riding, white-water
rafting, fishing, baseball camps, rock climbing,
and camping. For further information call
970/726-1540 or visit the Web site at
www.nscd.org/programs.
Various Locations Nationwide
With 140 sites nationwide, Easter Seals offers extensive camping and recreational programs that
provide all the joy and challenges of camping in a
Page 7
Looking back in time….Birth through Age 5 - Part 4
BY: LAURA TOFINCHIO
For those of you that have not had an opportunity
to read my first three articles, this is the fourth
article reflecting back in time at some of the triumphs and challenges my daughter, Brittany, has
experienced as a congenital bilateral, below elbow amputee. In other words, she was born
missing both her hands and part of her arms below the elbow. Brittany is now 19 years old.
Our First Year
On August 4, 1987, our daughter, Brittany, was
born. She was born missing both her arms below
the elbow. Brittany is our first child and my first
pregnancy. Like many parents, you are filled
with anticipation and joy. I had two ultrasounds,
neither of which indicated any problems. I had a
perfectly normal pregnancy, and we have no family history of birth defects. As a result, her limb
loss was a shock when she was born. We loved
her and embraced her like most parents do, but
we also went through a grieving period that most
parents don’t go through.
As parents, we want to give our children things
we didn’t have, to be able to do the things we
couldn’t do and to have greater opportunities than
we were given. Knowing that Brittany was starting out in this world with less than what we had
physically and being so uncertain of the future,
we went through a period of grief. We did not
grieve over the fact that our daughter was different but over the loss of her limbs. We couldn’t
begin to fathom how someone missing part of
their arms and their hands could function without
our assistance for the remainder of their life. The
questions that went through our minds were endless. They began with how would other children
treat her, how will she write, how will she eat on
her own, what can we do to make her life easier,
how will she feel about herself, are there other
problems that we don’t know about and the obviPage 8
ous question – why us?????
As a result of numerous phone calls (pre-internet),
we learned about a program in Texas called
“Loving Arms” that was fitting young children with
Passive and Myoelectric Arms. Passive arms are
like “baby doll” arms.
They are arms with hands
that fit over the elbow and
give the child the extension
they need to reach for and
bat at objects. They also
allow the child to the get
used to wearing a prosthesis before getting the more
advanced Myolelectric.
The Myolelectric Arms work with a battery and a
sensor. For young children, the small battery is
hooked onto their clothing. The sensor is located in
the cast and is pressed against the child’s forearm
muscle. When the child flexes the muscle, the hand
opens and when they flex again the hand closes. It
takes practice to perfect this movement, but once
they do, it allows them to pick up objects, feed
themselves and do almost everything a two handed
child could do. Keep in mind this was the technology available back in 1987.
After researching this option, we decided to enroll
her in the Texas program. So, when she was 3
months old, we boarded a plane to Texas to fit her
with passive arms which were to prepare her for the
Myoelectric Arms. When Brittany’s arms were cast
for the prosthesis, she screamed. She hated being
fitted for the arms and didn’t like to wear them.
Every time we had to put the arms on, she would
scream and cry. They did not cause her pain, she
just needed to adjust to them. It was so painful hearing our 3-month-old little girl crying over what we
felt needed to be done so that she had every option
Looking back in time….Birth through Age 5 - Part 4 (Cont’d)
BY: LAURA TOFINCHIO
open to her later. This is where the tough love
approach began and continues to be used to this
day. Not only did we deal with the pain of having to put our daughter through this, we had to
deal with the reality that her Myoelectric Arms
were going to cost $30,000 which we didn’t have
and weren’t sure the insurance company would
pay for!
As Brittany adjusted to her new devices, she began batting at objects and picking up objects with
her passive arms. It did not take long for her to
adjust to them, and she got quite adept at using
them. Since my husband and I worked full-time,
we enrolled Brittany in daycare. The caregivers
were very receptive to having Brittany and had no
problem learning how to put on and take off her
passive arms when necessary. Brittany did not
wear the arms all the time since it was important
that she also use her own arms.
Myoelectric Arms
At the early age of only 11 months, she was fitted
for Myoelectics Arms at Newington Childrens
Hospital. We chose not to go back to Texas since
Newington was willing to work with us. She became their youngest patient fitted with these
arms. She handled the arm casting much better
this time and was more receptive to using the
arms since these hands opened and closed.
There was extensive training required with the
Occupational Therapist and sometimes morning
battles to get her to wear them. Most parents
fight with their kids to brush their teeth, we battled over putting on her arms. However, we felt it
was important that she get used to wearing the
arms so she would have every opportunity to use
them to her advantage now and in her future if
Page 9
she chose to do so. We knew that when she got
older, it would be her choice whether to continue to
wear them or not.
Hiring an Attorney
Unfortunately that battle wasn’t the only battle we
had to deal with. As a result of a billing error from
Texas, our insurance company did not want to pay
for the Myoelectric Arms. Facing a potential
$30,000. bill, we hired an attorney to pursue this
issue with the insurance company. Fortunately, we
won the case. However, the experience was emotionally draining even though it was essential in our
case.
Growing
As time marched on, Brittany got used to her arms
and so did her daycare. We trained them on putting
the arms on and about the proper care. We felt it
was important Brittany be around other children. As
with all children, they benefit from interaction with
their peers and be accepted and treated well. In effort to make things simpler, we learned to adapt and
she learned to adapt. From purchasing bottles that
had hollow centers so she can hold them, to toys
that she would be able to grasp,
to using wide bowls so she
could grab her cheerios, it made
life a little easier. We had to
look through her eyes at her
world to determine what would
and wouldn’t work for her.
Much of this was trial and error.
We made a conscious effort to
never tell her she couldn’t do
something. We always let her
figure it out on her own, sometimes with assistance
and sometimes without. To this day, she continues
to amaze us with how she accomplishes so many
BY: LAURA TOFINCHIO
things we thought she couldn’t at birth.
Once in a while, we would have a good giggle
when she would wiggle out of her arms in public
places. The expressions on people’s faces were
priceless. Even though we felt bad for them in a
way, we couldn’t prevent our strong-willed
little girl from taking
them off when she
wanted to – so instead, we had to
laugh. These situations would have
made a great “Candid
Camera” show!
Choosing clothing
was a bit of challenge because we wanted her to
learn to dress herself like all other kids. So, we
purchased lots of pullover shirts, stretch pants and
velcro shoes. We also discovered an excellent
tailor and had all her long sleeve shirts, sweater
and jackets altered so they fit her arms. This
made life a lot more manageable.
No More Myoelectrics
At around the time Brittany turned 3, she was discovering that she liked to do more things with her
own arms rather than using the Myoelectrics.
Because we thought this day would eventually
come, we were ready and let her choose when
and if she wanted to wear them. She opted not to
wear them again. However, we knew that she had
the option to rethink it in the future. Without the
heavy Myoelectric Arms, Brittany was still able
to fully dress herself, feed herself and take care of
her personal needs. The sense of touch with her
Page 10
own arms allowed her to do more with them than
she had with the prosthesis. However, we do not
regret giving her this option early in her life and are
grateful she made her own decision about using
them or not.
Daycare and Outside Activities
Life in daycare was great, because the group was
small and familiar. There was a lot of communication between us and the daycare staff, and Brittany
felt loved and accepted. As an activity, Brittany
participated in the dance class and took swimming
lesson. Learning to swim took a little longer than
most children, because she didn’t have hands to cup
the water to push her along. However, after a number of lessons, she mastered it and stills swims to
this day.
Being out in Public
To me it was important that Brittany be treated like
any other child, NOT SPECIAL, just like everyone
else, which includes going out and being with the
public. Because of her exposure to others, she has
taught so many people to appreciate what they have,
that life doesn’t end when something is taken away
from you or missing and that if you love yourself
the world will also love you. Her message was loud
and clear by simply watching her determination.
Having a Second Child
During Brittany’s first year, we never thought we
would have a second child. The work involved with
Brittany and her arms was a labor of love but time
consuming. Also, we were fearful the second child
could have something wrong which would take
more time away from our already busy days. What
if the disability was worse and more demanding?
Since there was no known cause for Brittany’s dis(Continued on page 11)
BY: LAURA TOFINCHIO
ability there were so
many questions that
went through our
heads. We didn’t know
what was in store for
Brittany and how
much time we would
have to devote to her
above and beyond a
“normal child”. The
future was so uncertain
and we were scared.
Two and a half years
after Brittany’s birth,
we decided to have
another child. I met
with a nutritionist and
took a number of nutrients daily that supported a
variety of tissue, body and organ functions as a
way of decreasing the chances of having anything
go wrong. During the pregnancy, I had a couple
of ultrasounds and amniocentesis. All appeared
to be normal. Despite the tests, I developed a fear
that my child would be deaf. I feared that since
Brittany didn’t have hands, she wouldn’t be able
to communicate with the second child. At times,
these fears could be all-consuming and my imagination would run wild.
Fortunately, our son, Garrett, was born without
any problems. As both
Brittany and Garrett
have grown, they have
been there for each
other and supported one
another. Knowing they
have each other is a
great comfort to my
husband and me. Obviously, I am very thankful that my fears did not
Page 11
prevent me from having that second child!
Moving on to Elementary School
As the elementary school approached, new fears,
new concerns, new kids, new environment
prompted a whole new set of questions. Even
though this sounds like many other parents’ concerns when their child goes to elementary school,
the questions are
different - “will
she be treated differently or poorly
based upon her
appearance”, “will
it devastate her for
the rest of her
life”, “will my extraverted child that
had a positive self
image in daycare become an introverted child with a
poor self image if the kids are cruel and if the teachers “baby” her too much or tell her she can’t do certain things”? How much control can a mother
have??? A lot more than you think…Keep on
building that all-important self-esteem and stay connected in your children’s daily lives…It’s so worth
it!!!
I hope you found this article helpful. My last article
will share with you where Brittany is now and her
college experiences. As I mentioned in my last article, if anyone is interested in speaking with me directly, I can be reached at 203 925-0446 or via
email at LKTofinchio@aol.com. Brittany and I
have had 19 plus years of challenges in our lives,
and we wouldn’t change a thing! We would be
happy to assist you in whatever way we can. My
best to all of you.
HHF On-Line Lending Library is Ready to Serve You
Our on-line lending library is
full of resources that can be accessed via our website
(www.HelpingHandsGroup.org)
for all of our members to utilize.
We feel it is important to have
some inspirational and informational materials available to all
families. We hope all of you will take full advantage of the wonderful opportunity to read some
great materials relating to children and limb loss.
You can browse our materials and choose what interests you. The material will be sent to you for one
month. After that month, we ask that you return
your selections for others to enjoy. If you have
anything to add to our library or suggestions for
us, please let us know at librarian@helpinghandsgroup.org We look forward to
serving you in the near future!
Book Review– Elmer
Elmer, with a patchwork coat, is the jester in a herd
of elephants. But, he starts to feel like the only reason they laugh at his jokes is because of how he
looks. So, off he goes to roll in some gray berries to
cover up his coat and when he returns to the herd,
they just think he's another elephant. Without him,
they just stand there, are very serious, and have no
fun at all. Somehow, Elmer thinks this is funny and
just has to laugh so he says "Boo" and all the elephants jump about a mile. They start laughing and
wish Elmer was there to hear the joke when it starts
to rain and off comes Elmer's disguise. They all
laugh at his wonderful jokes and are very happy
he's there. It's just a great book, very colorful and
very intriguing to read.
From a Reader on Amazon.com
'Little Fins' support group offers invaluable resources
Gerry Hanggi is your typical 5-year-old. He plays
T-ball, learns karate and jumps on the furniture.
But one thing sets Gerry apart from most of his
peers, although he rarely mentions it; he was born
without a left hand. "He doesn't seem to notice he's
different," said his mother, Sonja Hanggi. "I don't
think he sees it as a big deal at all." The Lino Lakes
boy was born with an upper limb difference, meaning he lacks a hand and part of a forearm. His doctors don't know what caused the limb difference,
which is not genetic and occurs in about one in
every 2,500 births. "I had no idea you could be born
without a limb," said Sonja. "Nobody ever told us
about that." Sonja and her husband, Jerry, were
"surprised" after Gerry was born, since none of the
prenatal tests indicated anything was wrong. "I'll be
honest, I went through a little stage of depression,"
said Sonja. "I worried about him. I thought, 'how is
he going to make friends, or tie his shoes, or learn
Page 12
all the other things he's supposed to learn?'" Instead
of feeling sorry, however, Sonja decided to take action. She founded a support group for parents of
children born with upper limb difference, which has
provided invaluable resources for her family.
"It's really nice to have other families to talk to who
are going through the same things we are," she said.
She and fellow mom Elizabeth Bystrom, of White
Bear Lake, started the group and named it "Little
Fins," after the animated movie "Finding Nemo."
The film's hero, a clown fish, is born with one fin
smaller than the other. "It's great to have this help,
to bounce ideas off of each other," said Sonja of the
group. The Hanggis had little luck finding their
own support after Gerry was born. They asked
around, but nobody knew of any such support
groups in the Twin Cities.
They eventually met Elizabeth at a pizza party at
Gillette Children's hospital, whose 3-year-old
daughter, Lila, was born without a right hand. For
'Little Fins' support group offers invaluable resources
the Bystroms, it wasn't a
surprise. Ultrasounds
revealed Lila was missing a hand. Lila knows
she's different, Elizabeth
said, but she has learned
that it's just one of the
many differences that
make her special.
"Mommy is short,
Daddy has curly hair
and Lila has a little
hand," Elizabeth said.
"We're all different,
that's what makes us the
same." The adventurous little girl doesn't let her
"little hand" slow her down. "She's invincible,"
Elizabeth said. "That kid can do anything."
Lila uses a prosthetic, her "helper hand," as she
calls it. "She can change clothes faster than a runway model," Bystrom said. Many parents choose
not to outfit their child with a prosthetic. After
much soul-searching, the Bystroms decided they
would. "We wanted her to learn to use one while
she is young," Elizabeth said. "Once she is older,
she will be able to decide if she wants to wear it or
not."
"I'm glad we now can offer advice and support to
the new parents that come to us," she said. Gerry
also has a prosthetic hand. But he prefers to go
without the prosthesis, and has learned to do almost
everything the other kids can do without it, Sonja
said. Until recently there were about 25 Little Fins
families. But last month, Little Fins was featured
on KARE 11 News. The publicity brought dozens
more families into the group.
Sonja said it's a comfort to share ideas with parents
going through the same unique situation. For instance, Sonja had a hard time finding a "sippy cup"
for Gerry, since they all required both hands to
Page 13
grasp them. "I probably bought every cup Target
had," she said.
She eventually found a cup that worked, and is now
able to pass her tips on to other parents.
Gerry is now one of the oldest children in the
group, and Sonja hopes seeing him running around
like a normal child is a comfort to other parents. "It
would've helped us so much to see other kids running around (when Gerry was a baby)," she said.
"Everyone said he'd be fine, but you still worry."
The kids themselves pay little attention to each
other's limb differences when the group is together,
Sonja said. "It's so funny; they don't even notice,"
she said. "Maybe when they're bigger, but right
now, it's 'let's go play.'" Elizabeth said it helps to
know that when they do get older, they will have
other children like themselves to share their frustrations. "They will have someone to call; someone
they relate to; someone else who understands what
they're going through," she said.
Gerry now is in his second year of preschool, and
so far, the other children haven't reacted much to
the limb deficiency. "Most reactions go over his
head," said Sonja. "Eventually he will have to explain it himself." The Hanggis are practicing responses with him, such as "this is the way I was
born," or "God made me this way." Some issues
still loom ahead, such as handling school, driving
and sports. And eventually, Sonja said, Gerry will
notice more when others point or stare. "If people
are curious, we'd much rather they ask about it instead of pointing or whispering," she said. "I know
people are curious, and it's OK to ask." At first, "I
tried to figure out a reason for why this happened,"
she said. "It's now pretty clear to me that (Little
Fins) is the reason."
http://presspubs.com/articles/2007/01/24/
news/200701247-archive.txt
Saving Summer - Mary Leighton, 30
How She Stays Fit
Pilates. As a certified instructor,
she's adapted a class for her campers.
Latest Obsession
Decorating her newly built New
England Cape-style house on 150
acres
Why We Admire Her
When Leighton met 13-year-old Jonathan the
first day of camp, he was so self-conscious about
leaving his wheelchair — he was missing a leg
— that he barely spoke. The occupational therapist eventually coaxed him out of his chair to try
Pilates and learn how to hop. By the time the Hawaiian-themed farewell bash came around, Jonathan was doing the limbo and grinning ear to ear.
Helping kids with limb loss feel comfortable being themselves is the reason Leighton founded
Camp Ability, a yearly 4-day event.
How She Got Started
In 2002, Leighton was working with 2-year-old
Nicholas at Therapy Corner, a private clinic in
Winthrop, Maine. Missing both arms, one leg,
and part of one foot, Nicholas took his first steps
ever with the help of a prosthetic. Amazed by his
ambition, Leighton, who'd been looking for a
professional specialty, had found her niche: prosthetics. In April 2004, a fellow therapist sug-
gested she start a summer camp for
disabled kids. At first, Leighton
laughed. But a few days later, she
phoned the Pine Tree Society, a
foundation for disabled people that
runs a 280-acre summer camp for
kids with special needs. They agreed
to host a minicamp. She began
throwing spaghetti suppers to raise
money and calling colleagues for advice. Health care companies like
Hanger Prosthetics & Orthotics soon
signed on as sponsors. By August 2004, she'd
roasted her first s'mores with five campers.
What She's Accomplished
In 3 years, Camp Ability has hosted 59 campers
(14 of whom attended a sister camp in Coeur
d'Alene, Idaho, which Leighton co-opened last
fall). In addition to hiking, swimming, and building
campfires, kids attend support groups, exercise
classes, and therapy sessions. "Helping these kids
realize that this is just the beginning of what they
can accomplish makes all this work worthwhile,"
says Leighton, who continues to work full-time at
Therapy Corner and uses vacation days to run the
camp with a physical therapist and 50 part-time
volunteers.
What's Next
This summer Leighton is opening a third camp in
Big Bear, California.
For more information on Camp Ability at any of
their three locations in Maine, Idaho or California,
see the article in this newsletter entitled “Summer
Camp Activities” (pg. 3), or visit their website at
http://www.campability.net.
Page 14
New Members
Welcome to the many new families that have joined Helping Hands in the past year. If we missed your
name please contact Beth Morley at (508) 622-1021 or newsletter@helpinghandsgroup.org
Families
•
Rita Peters and daughter Mia from Riverview, FL
•
Kevin & Meg Peterson and daughter Morgan from Milford,
NH
•
Nicole Baird and son James from Runnemede, NJ
•
Josie Philon and daughter Julia from Newtown, PA
•
Prashant Bhardwaj and daughter Misha from East Rutherford, NJ
•
Kallie & Mark Pournaras and son Alexander from Nashua,
NH
•
Alison Broksas and daughter Eva from Alexandria, VA
•
•
Heidi Carlson and daughter Julia from Concord, NH
Kellyann Reddick and son Jace Jin David from Hulmeville,
PA
•
Cynthia Carter-Betancourt and daughter Sarah from Dayton, NJ
•
Marie & Carl Sanderson and son Christopher from Walcott,
CT
•
Brenda Copeland-Moore and daughter Michaela from Larsen, WI
•
Michele Schlapfer and son Jacob from Wethersfield, CT
•
Don Smith and son Brian from Washington, DC
•
Anne & Michael Crane and son Aiden from Littleton, CO
•
Nikki Smith and son Mason from Yucaipa, CA
•
Leslie Edmark and son Conner from San Antonio, TX
•
Cat Strickland and daughter Nicole from McDonough, GA
•
Pam Fox and daughter Alyvia from Midwest City, OK
•
Brandy Thomas and daughter Amelia from Kinder, LA
•
Sharon Gerald and daughter Hannah from Groves, TX
•
Ginger Tripp and daughter Brielle from Somerset, MA
•
Kelly Goede and son Ty from Alachua, FL
•
Bennie Tullis and son Josiah from Snyder, TX
•
Angela Gonzalez and Baby from Houston, TX
•
Joni Wagner and daughter Abby from Salem, SD
•
Honor Hall and daughter Jadyn from Santa Barbara, CA
•
Desiree Williams and daughter Peyton from Alva, FL
•
Joel & Almira Hunter and son Cosmo from Henderson,
NV
•
Tamera Wong and daughter Bethany from Clovis, CA
•
Christina Jachens and daughter Monique from Pisgah Forest, NC
•
Emma Kennedy and son Sam from Edgartown, MA
•
Milissa Kowlessar and son Ezekiel from Brooklyn, NY
•
Carrie Davis-Croson , Adult amputee
•
Debra Lemke and son Nick from Waukesha, WI
•
Shatona Lunceford from Mountain City, TN
•
Rita Lytle and son Joshua from Springfield, IL
•
Margaret Rakowski from Lawrenceville, NJ
•
Laura Mann and daughter Alexis from Harrison, MI
•
Javier Serrano from Somerville, MA
•
Connie Mantlo and daughter Melody from Gold Hill, OR
•
Maria Marino and son Luca Guyer from New York, NY
•
Sue Marshall and Baby from Toronto, ON
•
Margaret McGowan and son Brian
•
Claribel Mendez and daughter Jayden from Newark, NJ
•
Anne Miller and son James from Cambridge, MA
•
Sheryl Nyary and son Tyler from Biloxi, MS
•
Rebecka O'Neal and daughter Monica from Oklahoma
City, OK
Page 15
Interested Persons
Professional
•
Amy Browning from Dallas, TX
Donations
If there is any way you can help us to continue our
mission of keeping all of our families connected
via newsletters, our new website and annual
events, it is very much appreciated by all! Any donation received (other than annual dues) is recognized by a formal thank-you letter to the donor.
In Memory of:
Helen Tatlow
•
Alice & Ray Fitzgerald
In the Honor of:
Annie Garofalo
•
Mark Carney
•
Lisa Edgar
•
Joan & Lee McGrath
•
Annmarie & Keith Morse
•
Frances Garofalo
•
The Guernsey Family (Kenn, Lana, Kate &
Alex)
Shawn Terrill
•
Anne & Robert Stent
Joseph Haley
•
Ava Ferrie
•
Jeana Lee
•
Joseph & Kimberly Spadaccini
Anne & Robert Stent
Danielle Sousanes
Blair E. Rodgers
•
Family of Patricia Thomas
•
James & Rita Rodgers
•
Frank W. Marvin Jr.
•
Christine and Vance Likins
•
Mary & Russell Williams
•
Elizabeth Magee
•
Mr. & Mrs. Russell Peach, Jr.
•
Lois Denis
•
St. Sophia Philoptochos Society
Izabel Estrin
•
Edie Denney
Caitlin Cole
•
H. Edward & Josephine Reed
Matching Gifts (Corporate)
William Garber
•
Intensimed, LLC
•
Anne & Robert Stent
•
BECFI
•
Nancy & Steve Soucy
•
Smart Destinations, Inc.
Eva Johns
•
Nancy & Steve Soucy
Fundraiser
Erin Soucy—Beaded Bracelet Sale raised $125.00
Thanks Erin!
Page 16
Giving Your Child the Gift of Self-Esteem
Guest Editorial:
by Char Greer
Volume 9 · Issue 4 · July/August 1999
I have had the opportunity of working as manager
of the Area Child Amputee Center (ACAC) in
Grand Rapids, Michigan, which provides services to
families and children with limb differences. During
the past 10 years, I have talked with many families
who have children with limb differences and have
learned what type of information and support is
most helpful to families.
Most new parents have planned for months, awaiting the arrival of the new baby, and thinking about
the future. When a child with a limb difference is
born, suddenly the child’s future seems clouded and
parents have many questions, such as: “Will my
child be successful in school?” “Will my child be
able to ride a bike and run like other children?”
“Will my child have a good self image?” “Will my
child have friends, grow up, get married and have
children?”
These questions and concerns are normal as are
feelings of sadness. It is important for families to
take time to adjust and be with their new baby. This
will help alleviate some of the feelings of sadness;
however, this is also the time parents need to seek
out information, get the support necessary to make
adjustments and begin understanding what the future might hold for their child.
One mother, who came to the Center for an initial
visit, told me how shocked she was when her baby
was born with a missing limb. She would go to her
son’s crib and check his body several times during
the night, hoping that there would be an arm where
there was none. It took her a while to accept that the
limb loss was real and permanent. But holding, caring for and loving her son made some of her grief
disappear and allowed her to take the necessary
steps toward setting up his evaluation and begin
planning for his future.
As soon as possible after birth a child with limb loss
should be seen by a team of professionals at a child
Page 17
amputee center. This team should consist of a physician, such as an orthopedic surgeon or physiatrist, a
pediatric nurse, physical and/or occupational therapist, social worker, psychologist, dietitian and recreational therapist. A prosthetist should be part of
the team for those children who will need prosthetic
devices for functional and cosmetic purposes. These
professionals should have experience working with
children with limb loss, and should provide parents
with information on what to expect regarding medical needs, future surgeries, therapies, and use of
adaptive equipment and/or prostheses.
An important role for the team at ACAC is to listen
to the family’s concerns and fears, and to answer
questions about growth and development. Our goal
is to work closely with the family and provide input
that enables the child to parallel normal growth and
development.
Two questions families often ask is, “Will my child
be accepted by family and friends? And how can I
raise my child to have a healthy self-image?” All
parents want their child to be accepted by friends,
relatives, classmates and teachers. This process of
acceptance begins with parents learning how to
comfortably respond to questions about their child’s
physical difference. This can be difficult at first. But
brief answers to others is usually enough and,
though it may be hard at first, in time it usually becomes easier.
Childhood experiences are the primary influences
that will determine the child’s self-esteem. The parents, guardian and other family members send verbal and nonverbal messages to the child, on the basis of which feelings of self-worth are formed. If a
child is told to cover up the limb difference and not
talk about it to others, a negative self-image can develop. Conversely, if the family members encourage
open discussions about the limb difference, and
maybe even see some humor in the situation at
times, the child will begin to feel accepted.
The mother of a young girl shared with me her experience of dealing with her daughter’s limb difference in a grocery store. The young girl’s lower limb
prosthesis fell off while she was sitting in a shop(Continued on page 18)
Giving Your Child the Gift of Self-Esteem
ping cart. Concerned about how her daughter might
experience the stares and “wide-eyed” glances
aimed at her, the mother turned what could have
been a negative experience for her daughter into a
positive experience. She smiled at those near her,
picked up her daughter’s prosthetic leg, put it back
on her, and resumed shopping. She laughs about
that experience now and admits that it helped her
become more open in sharing her daughter’s limb
loss. She also sent a nonverbal message to her
daughter that was positive.
Self-concept continues to develop in the toddler
years as children explore their limits, their abilities
and understand how they impact others. During
these years and later, setting realistic goals is an
important aspect of assisting a child in developing
good self-esteem. For example, if a child is interested in pursuing specific sports or physical activities, the parents can assist the child in choosing
what to do. It should be an activity or sport that the
child has some natural aptitude for and interest in,
and there is a good chance that the child might be
able to do it well.
It may take a lot of work and time to learn to do the
activity well. Special techniques or even assistive
devices may be needed. Input from therapists, the
prosthetist and other members of the child amputee
center team can be useful to parents and child deciding which adaptive devices or techniques to use.
Because school-age children are even more aware
of differences among people and experience a great
deal of peer pressure, they can become preoccupied
with self-evaluation. Teasing can be especially
troublesome for a child with a limb difference.
Dealing with teasing by peers is an issue for children 5 to 10 years of age when relationships with
friends and being “one of the gang” is important.
The ACAC team recommends that parents explain
to their child that everyone is different in some way
and point out that most children get teased about
something. It may be helpful to share some of the
parent’s own experiences. Families can role-play
on how to respond to teasing. It is also a good idea
for parents to support the child’s attempt to handle
Page 18
the problem himself. It is best if the child has the
opportunity to feel competent by handling these
types of situations on his own.
Peer acceptance is especially an issue in early
adolescence. Often there is no other child in the
school with a limb difference; in fact, a child may
never have met another child with a limb difference. Families and children have reported that
meeting other families with children with limb
differences is helpful.
Each year ACAC has a family picnic with the intention of providing an opportunity for families
and children to meet one another and interact in a
nonmedical setting. This is held in late August
before school begins for the year. One child told
his family that going to the picnic and seeing
other children with limb differences helps him feel
better about starting a new year in school. He realized that he was not the only child who looked
“different” and that others were facing similar
situations with fears about meeting new classmates and teachers. It is also helpful for a child to
have one or two very close friends who will stand
by him, especially in difficult situations. As children develop meaningful relationships with peers,
self-esteem rises.
Again, a team of professionals who work with
families with children with limb differences can
provide support and information based on their
experiences and interactions with these families.
Although families with children with limb differences may have some rough roads to travel, and
some serious issues to anticipate, these children
can grow and develop as other children.
Everyone has strengths and weaknesses, but acceptance of one’s self comes from early experiences of care and love from one’s family and support from the community and health care team.
About the Author
Char Greer, MPH, is manager of the Area Child
Amputee Center in Grand Rapids, Michigan, an
outpatient center treating children with limb differences.
A Helping Hands Star is Born
Kenzie Logan Waskiewicz and parents traveled to
Hollywood, California the day after Easter for a whirlwind experience in the movie industry. Met by other
upper limb and amputees from all over the country and
all over the world, Kenzie, Dayna and Eric spent 10
days in the world of entertainment. To say the least,
it
was
interesti n g ,
sometimes
boring
but alway exciting.
T h e
name of
t h e
movie is
"Charlie
Wilson's War" and is expected to be released around
Christmas 2007. Kenzie plays the part of a young Afghan child caught up in the middle of the 1980's rebel-
lion in Afghanistan. Along with other children,
Kenzie is in a refugee camp/hospital. Tom Hanks
and Julia Roberts are the lead actors. We did catch
a quick glimpse of Tom on the day of shooting.
Sorry we didn't get his autograph. It was a wonderful experience for all and a lot of new friends
were made. Look for Kenzie (hopefully not on the
cutting
room
floor ) in the
upcoming
movie.
Submitted
by
Dayna “mom”
Order your Duffle bag Today!
Looking for something to carry all your belongings to and from the pool or gym? The
Helping Hand Duffle bag is just the thing, and at only $15, it is definitely a bargain.
We also have a great selection of hats and T-shirts available for purchase!
New additions to the Helping Hands Store include items like the Helping Hands
Beach Towels, polo shirts, and flannel pants.
Check them all out at
www.helpinghandsgroup.org
You can print and mail the order form with a check.
Much thanks goes to Helping Hands’ dad, Bob Callahan, for his efforts in providing
this merchandise with our embroidered logo.
Thanks Bob (& Marcy) for your support!
NEW ITEM!
HHF Beach Towel
Page 19
Rizzo’s Golf Swing Improves at First Swing
By Stephen Rizzo
I am a below-elbow congenital amputee and have
been golfing for a few years. Until this summer, I
had not been taught how to golf by a pro, just my
dad. Before I went to the First Swing Clinic, I
got frustrated when I played. The two main reasons that frustrated me were how I sliced the ball
to the right on most of my shots, and I had to 4 or
5 putt to finish one hole. So, last summer, I went
to a First Swing Clinic to see if they could improve my game.
When I was in the car going to the clinic, I was
unsure of what they would do to try to improve
my swing. When we got there, they were finishing setting up, so one pro, “Lefty”, told me to
grab my clubs and start hitting some balls. He
was also a BE amputee but on the opposite side
of me (even though he golfed righty as I did).
The first thing Lefty tried was to have me swing
lefty (that means swinging
forehand like he does). I
could not seem to make contact with the ball. So, he told
to go back to righty and try to
use a flexible club that requires less strength. I took
one swing with the club, and
he said, “You are too strong
for the flexible club”. Now
that we determined that I
should golf righty with regular
clubs, he worked on ways to
make the ball go straight. He
re-arranged my grip on the club and eliminated the
problem. He also helped my putting by giving me his
old long putter to try. It allowed me to have a more
fluent stroke and more accurate put. Now, my game is
improved and I can compete better with my friends
when we play.
See Page 21 for listing of First Swing Clinics.
Questions from HHF Families
We receive many questions throughout
the year from new families of children
with upper limb differences. If you
have any advice or questions for other
families, please submit them to Patti at
President@helpinghandsgroup.org.
“I need help. Hannah wears a prosthesis and we
have had problems with a rash we can never get
rid of on her arm. We've tried all kinds of
creams and using powder before we put her
sock on but we don't know what to do. “
Thanks, Sharon Gerald
(timothyag@sbcglobal.net)
“Our daughter Caitlin is gearing up for college
and we were wondering about national scholarships that might be out there for kids with disabilities. Do you have any suggestions or can
you send this question to someone who may have
been through the process?”
Thanks, Scott and Jody Cole
(ifrider@gmavt.net)
Page 20
“Does anyone know of a company that could custom
make a baseball glove for my son?”
Thanks, Michele Schchlaper (dschlapfer@cox.net)
Note: I know many of our members would benefit from
this information .
Please include the
info@helpinghandsgroup.org email address on the email
so we can include the information on our website.
First Swing Clinics
NAGA in conjunction with the Disabled American Veterans (DAV) Charitable Trust, Professional Golf Association (PGA) and the United
States Golf Association (USGA) sponsors nationwide "First Swing" seminars and "Learn to Golf"
clinics annually. The one-or-two day clinics
bring golf professionals, physical and recreational
therapists, and the physically challenged together
to teach, learn, and enjoy golf.
The First Swing began in 1988 and was developed and perfected by a double below knee amputee, Bob Wilson, National Amputee Golf Association Executive Director. The program was designed to instruct therapists to teach and encourage the disabled to learn, or re-learn, the game of
golf — not only because just about every physically challenged individual, regardless of age, is
able to play, but also because it contributes dramatically to the individual’s emotional and physical well-being, instilling self-confidence and
pride in personal achievement.
The First Swing also enables the individual to
enjoy the unique, friendly atmosphere found on
the golf course. Rehabilitation hospitals, parks,
recreational departments and prosthetic and orthotic centers host the one or two-day program.
The first day of the program teaches the basics of
the game to therapists and others interested in
correctly teaching the disabled. The rules of golf
and the singular differences presented by various
types of disabled individuals are discussed. Participants are invited to swing a club standing on
one leg, sitting in a wheel chair, using only one
hand, etc., to better appreciate the demands that
will be made on their educational training in
teaching others. The second day is devoted to instructing the disabled participants attending the
learn to golf clinic phase of the program under
the supervision of NAGA instructors.
The program is open to every disabled individual
and is offered at no cost to the host facility . Click
here for information on how to set up a First Swing
or contact NAGA.
NAGA's 2007 First Swing Seminars
Learn to Golf Clinics Schedule
"Learn to Golf" Clinics for
Persons with Disabilities
April 20th
Rockville, MD (Woodmont Country Club)
Disabled Sports USA
Julia Ray Phone: 301-217-9840
451 Hungerford Dr, Suite 100, Rockville, MD
20850
E-mail: events@dsusa.org
April 24th
Charlottesville, VA (Meadowcreek Golf Course)
Charlottesville Rec. & Leisure Svcs.
Mildred Spicer Phone: 434-970-3264
P.O. Box 911, Charlottsville, VA 22902
E-mail: spicer@charlottsville.org
April 25th
Philadelphia, PA (Burholme Golf Center)
Moss Rehab Hospital
Kristen Gebhardt, CTRS Phone:215-663-6717
60 E Township Line Rd., Elkins Park, PA 19027
E-mail: kgebhardt@einstein.edu
May 4th
Center Valley, PA (Center Valley Club)
Good Shepard Rehab Hospital
Linda Bolliinger, CTRS, Phone: 610-776-3588
501 St. John St., Allentown, PA 18103-3296
E-mail: lbollinger@gsrh.org
Page 21
First Swing Clinics (Cont’d)
May 4th & 5th
Inglewood, CA (Lakes-El Segundo Golf Course)
Centinela Freeman Hospital
Karen Roseman RPT,
Phone: 310-674-7050 ext 3107
333 N. Prairie Ave., Inglewood Ca 90301
E-mail: karen.roseman@centinelafreeman.com
May 7th
Piscataway, NJ (Fairway Golf Center)
JFK Rehab Institute P & O Clinic
Sue Callaghan, PT Phone: 732-321-7056
65 James St., Edison, NJ 08818
E-mail: suecpt@msn.com
May 10th
Saddlebrook, NJ (Willowbrook Golf Center)
Kessler Institute for Rehab
Ann Marie Chesterman Phone: 201-368-6012
300 Market St., Saddlebrook, NJ 07666
E-mail: achesterman@kessler-rehab.com
May 14th
Lyons, NJ (MAVERIC Driving Range & Learning Center)
VA Medical Center
Bob Valentino Phone: 908-647-0180 xt 6884
151 Knollcroft Rd., Building 57, Room 148
Lyons, NJ 07939-5000
E-mail: robert.valentino@med.va.gov
May 16th
Marlton, NJ (Indian Springs Golf Club)
Marlton Rehab Hospital
Elizabeth Louie, CTRS
Phone: 856-988-8778 x 2033
92 Brick Dr., Marlton, NJ 08053
E-mail: elouie@marltonrehab.com
May 18th
Elkridge, MD (The Timbers at Troy)
Nascott Rehabilitation Services
Jason Bulger Phone: 800-535-6556 x2159
2301-C Broadbirch Dr., Silver Spring, MD 20904
E-mail: jason.bulger@medstar.net
May 21st
Lincoln, CA
(Lincoln Hills Club)
Paul Apfel Phone: 916 408-1308
1005 Sun City Lane, Lincoln, California 95648
E-mail: papfel@starstream.net
May 24th
Elmsford, NY (Fairview Golf Center)
Burke Rehab Hospital
Deirdre Otto, CTRS Phone: 914-597-2355
785 Mamaroneck Ave., White Plains, NY 10605
E-mail: dotto@burke.org
May 25th
Waterville, ME (Waterville Country Club)
Waterville Area ASG & Hanger P&O
Kim Collett PT Phone: 207-872-4400
Seton Rehab, 30 Chase Ave.
Waterville, ME 04901
E-mail: Kimberly.collett@mainegeneral.org
June TBA
Harrison Township, MI
St. John North Shores Hospital
Claudia Cartwright Phone: 586-466-5354
E-mail: claudia.cartwright@stjohn.org
June 1st
Schenectady, NY (Stadium Golf Course)
Sunnyview Rehabilitation Hospital
Connie Todt, CTRS Phone: 518-382-4576
1270 Belmont Ave., Schenectady, NY 12308
E-mail: CTodt@sunnyview.org
Page 22
June 2nd
Baltimore, MD (Pine Ridge Golf Course)
Kernan Rehab Hospital
Pam Cauley, CTRS Phone: 410-448-6320
2200 Kernan Dr., Baltimore, MD 21207
E-mail: pcauley@kernan.umm.edu
June 2nd
Braintree, MA (Braintree Municipal Golf Course)
Braintree Muncipal G C
Bob Beach, PGA Phone: 781-843-6513
101 Jefferson St., Braintree, MA 02184
E-mail: golfshop@braintreegolf.com
June 4th & 5th
Wilsonville OR
(Langdon Farms GC)
Patty Brescia, Senior Services Manager
Phone: 503-570-1525
7965 SW Wilsonville Rd., Wilsonville, OR 97070
E-mail: Brescia@ci.wilsonville.or.us
June 8th & 9th
Lincoln, NE (Lincoln GC)
Madonna Rehabilitation Hospital
Susan Fager, MS CCC-SLP
Phone 402-483-9554 / 9459
5401 South Street, Lincoln, NE 68506
E-mail: sfager@madonna.org
June 8th & 9th
Cranston, RI (Mulligan’s Island Club)
First Swing Rhode Island
Dan Clawson Phone: 401-580-4476
7408 Post Rd., North Kingstown, RI 02852
E-mail: dclawson@rhodygolf.com
June 15th
Addison, IL (Addison Links and Tees)
Orthotic & Prosthetic Assistance Fund (OPAF)
Robin Burton, Exec. Dir. (215-752-5756)
750 Bridgeview Rd., Langhorne, PA 19053
E-mail: rlb@opfund.org
June 15th & 16th
Trempealeau, WI
(Trempealeau GC)
Bill Pearse PGA Phone: 608-534-7417
Trempealeau, WI 54661
E-mail: glfthemt@triwest.net
June 20th
Fort Monmouth, NJ (Suneagles Golf Course)
Manfredi Orthotics & Prosthetics
Jean Manfredi Phone: 732-222-0366
289 Broadway, Long Branch, NJ 07740
E-mail: jean.manfredi@verizon.net
June 21st
Hershey, PA (Hershey Country Club)
Hershey Medical Center
Jack Van Skike Phone: 717-948-5101
383 Aspen St, Middletown, PA 17057
June 22nd
Scotch Plains, NJ (Ash Brook Golf Course)
Co. of Union, NJ Parks & Recreation
Ellen Chase Phone: 908-527-4096
Union Co. Admin. Building, Elizabeth, NJ 07207
E-mail: echase@ucnj.org
June 28th
Farmingdale, NY (Heartland Golf Center)
Brunswick Hospital Center
Carol Chamoff, PT Phone: 631-789-7333
366 Broadway, Amityville, NY 11701
E-mail: pepsi4651@aol.com
June TBA
Piscataway, NJ (Raritan Landing GC)
Middlesex Co. Improvement Society
Lane Leal Phone: 609-655-5141
101 Interchange Plaza, Cranbury, NJ 08512
E-mail: jl@mciauth.com
Page 23
July 8th
Killington, VT
(Green Mountain National GC)
pat whitney Phone: 802-442-4653
P O Box 429, Killington, VT 05751
E-mail: pwhitney@vermontel.net
July 20th & 21st
Chaska, MN
(Hazeltine National Golf Club)
Mark Josefson Phone: 852-201-1463
1900 Hazeltine Blvd., Chaska, MN 55318
E-mail: mjosefson1@brimark.com
July 30th - 31st
Seattle, WA
(American Lake GC)
Kristie Goedhard, CTRS Phone: 206-277-6683
VAPSCHS 1660 S. Columbian Way (S-117-RCS)
Seattle, WA 98108-1532
E-mail: Kristine.Goehard@va.gov
August 2nd
Apalachin, NY (The Links at Hiawatha Landing)
Creative O&P & United Hospital Svcs.
John Michael Goff Phone: 607-733-5280
310 Pennsylvania Ave., Elmira, NY 14901
E-mail: jgoff@creativeoandp.com
September 13th
New Hartford, NY (Stonebridge Golf & Country
Club)
Sitrin Medical Rehab Center
Marc DePerno, PT Phone: 315-797-3114 xt 459
2050 Tilden Ave.,
New Hartford, NY 13413
E-mail: madyankee3@adelphia.net
September 14th
Pomona, NJ (Pomona Golf & CC)
Bacharach Institute for Rehabilitation
Beth Hoffman Phone: 609-748-2081
61 W. Jim Leeds Rd., Pomona, NJ 08240
E-mail: bhoffman@bacharach.org
October 12th
Rockville, MD (Woodmont Country Club)
Disabled Sports USA
Julia Ray Phone: 301-217-9840
451 Hungerford Dr, Suite 100
Rockville, MD 20850
E-mail: events@dsusa.org
August 17th
Windham, NY (Christman’s Windham House GC)
Adaptive Sports Foundation
Pam Greene Phone: 518-734-5070)
P.O. Box 266, 100 Siverman Way
Windham, NY 12496
E-mail: pgreene@mhcable.com
September 7th
Hanover, PA (South Hills GC)
Amputee Support Team & DSUSA
Tommy Wade Phone: 717-630-8326
340 Grant Dr., Hanover, PA 17331
E-mail: twade@snyder-han.com
Page 24
2007 Winter Outing—Group Picture
HELPING HANDS FOUNDATION
P.O. Box 332
Medfield, MA 02052
Email: Newsletter@helpinghandsgroup.org
Providing Support, sharing experiences, and
supplying information to families of children
with upper limb differences.
We’re on the Web!
Http://www.helpinghandsgroup.org
Grant Writing
Family Directory
We continue to look into
grants as a source of funding for our group. Grant
writing is a time consuming and tedious process.
But in the end, it may be a
logical way to support some of our expenses or
add new programs for the group. If you are
aware of any grants you believe we should apply
for, please contact any of the team members:
If you need a copy of the Family Directory or would
like to make a change to your listing, please contact
info@helpinghandsgroup.org. Our directory is confidential and is to be used solely for Helping Hands
Foundation, Inc. purposes.
Patti at President@helpinghandsgroup.org
Vanessa Fuhs at BnvFuhs@comcast.net
Michael Ferrie at
MFerrie@morriscompanies.com
Please let us know if you have any changes to the current information listed in our family directory. Please
check your information to make sure it includes your
correct address, phone,
email, HH child’s name
and DOB, as well as sibling information.

Winter Outing 2007 - Helping Hands Foundation

Transcription

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