KASF Newsletter Jan, Feb, March 2014

K A S F NEWS
KIDNEY ASSOCIATION OF SOUTH FLORIDA
KASF is a non-profit, all volunteer group formed by people who are kidney
patients and their families or kidney professionals. The mission of KASF is
to provide education and support for kidney patients, their families and friends.
Vol. V, No 1 Jan, Feb, March, 2014
A BUSY
WINTER !
In January we started off the year
with our annual Transplant
program with Florida Hospital
Transplant Institute (Orlando)
More pic’s inside !
In February it was time for our 5th
annual
Walk in the Park !
Always a great time and the weather
was perfect!!
More info and pics inside
Jan, Feb, March 2014 KASF Newsletter
One of our own, Karen Simmons who is our Vice
President, is also a “lifealysis” (dialysis) patient.
She enjoys encouraging and helping patients. She
informs patients about the rewarding benefits of
patient involvementand educational support available through KASF. Mrs. Simmons started the
Patient Advocate Committee (PAC) in her clinic
and has since advised other patients/staff to start
their own patient group.
The dialysis medical staff who work in the units
have a tough and unique job. They are a team
which has to work together to perform successfully. Every patient is different so the workers
have to keep track of everything. They are special
people indeed and deserve attention for their efforts!
Dialysis workers are our link to the process as we
plan different educational programs for the patients and their families. It is important that we
all work together for the patient’s well being.
At our Walk in the Park 5 this year we were honored to have Patty Feeley, a dialysis nurse of 30
yrs, share her long time experience and put to rest
a lot of myths about Dialysis treatment.
Thanks Patty!
President’s message
As a transplant patient myself I have had my
share of bumps along the road and am sure
there will be more but we persevere and move on. I
often say “there is always someone who has it
worse than me.” I was very close to going on dialysis when I got the call for a transplant back in
2006, since then, people have called me a warrior
from time to time.
Dialysis patients, They are the true warriors,
whether they are at a clinic 3 times a week, conducting peritoneal dialysis at home or while they
sleep. These patients deal with many issues everyday with restrictions that are not easy to live
with. Many still work everyday, some volunteer
their services to organizations like ours. I have
even met a guy who has been on dialysis since a
child and he is a Triathalete Iron Man competitor.
KASF BOARD:
Officers
President:
Ron Swords, 601-3438
ronsterart@bellsouth.net
Vice President: Karen Simmons, 541-7464
kksimmons_411@yahoo.com
Secretary:
Jill Morris, 844-7910
hbcmorris@comcast.com
Treasurer:
Julie Glennon, 832-8196
cassino0304@gmail.com
Board members at Large:
Ron and Leona London, 738-0005,
Carolyn Marquis, 348-0845
Carole Mayer, 626-7060
Jean Miller, 622-0876
Jan Symonette, 622-3745
Have a safe Summer! Ron
“Our Rose”
We are sad to say we have lost a good friend of
KASF, a personal friend to me and many others.
Rose Schmidt was an inspiration to many as she
faced dialysis and then was blessed with a kidney
transplant. Her positive and exuberant personality never failed to bring a smile to your face. She
was one of my mentors as I went through some of
the same issues. She showed me that through a
positive attitude you can accomplish anything
which is why I am still here today.
Ron
Office phone: 561-471-2588
1764 Congress Ave. N. #205
West Palm Beach, Fl 33409
Call and leave a message, someone will get back
to you soon. Or call us at the numbers listed.
above.
Thank you for your support
Our Rose will always be in our hearts.
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Jan, Feb, March 2014 KASF Newsletter
SOUTH SUPPORT
NORTH SUPPORT
THIRD THURSDAY
3 P.M.
at
Delray Grande
2300 High Ridge Road, Boynton Beach
(just east of I-95 at Gateway)
SECOND TUESDAY EVERY MONTH
6:00 P.M.
NORTHLAKE SENIOR CENTER
1 Mile west of Military Trail
on the right
We have an active core of participants who enjoy and
benefit from each others' company. We learn from
each other how to cope with kidney disease. Our
meetings offer support and education to persons
who anticipate needing treatment for their chronic
kidney disease as well those who have already
started. Call Jan at 561-622-3745 or Carole at 561-6267060 for more information.
Call Jan at 561-622-3745 or Carole at 561-626-7060
We meet together for sharing and learning,
and sometimes divide into patient and caregiver
groups for support and exploration of different
issues.
Call coordinator Rhonnie Leder
at 561-241-2060 or Ron London at 561-7380005 for more information.
Support groups give hope and understanding, information and verification, a place to talk and a place
to listen, find encouragement and share common experiences in our little known but now all too common
predicament, kidney failure.
Patients with Patience
Our bodies are sometimes in and out.
But our inner strength won’t let us doubt.
About God’s wonderful power;
Even in our weakest hour.
CREOLE SUPPORT ON CALL
For Haitian patients, we can offer
special meetings with Creole speaking
social workers, Beatrice Renelus and
Carline Charles: call 561-860-2588 to
arrange to meet with Beatrice or Carline for one on
one support and learning.
We see the sun at the end of each rainbow.
Getting brighter; but no one
Really knows when our lives will end.
SOUTH FLORIDA TRANSPLANT GROUP
Third Thursday of the month
7:00 to 8:30 P.M. at Transplant Care Center
2201 W Sample Road, Bldg 9-38 Pompano
Beach, Fl Meet with transplant recipients, pre
transplant patients, donor families, and medical
staff. Free, everyone welcome.
So our faith stands firm from day to day.
And we continue to believe and pray.
That God’s mercy will fill our lives,
Each and every day.
Karen Simmons
We are looking for talented people that
could help us spread the word.
Are you tech savvy? Do you have connections with the media?
Are you a creative fundraiser?
Any help would be appreciated as we
try and help kidney patients in the local
area. Call 561-601-3438
This KASF News is Volume V, No 1
the Jan. Feb. March 2014 newsletter of the
Kidney Association of South Florida,
a not-for-profit corporation.
1764 N Congress Ave, Suite 205
West Palm Beach, Fl 33409
We welcome your comments and questions, and
appreciate letters and news. Please contact our office at
561-471-2588, We want to hear from you.
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Jan, Feb, March 2014 KASF Newsletter
WALK IN THE PARK
Another successful event to raise funds for our local kidney patients.
We had terrific weather this year and even though attendance was a little off we had a great time walking, socializing, giving out prizes, and learning from each other.
Speaking of learning, Patty Feeley shared her vast experience in Dialysis care and broke down a lot of
myths about dialysis treatment. Her knowledge inspires many others by giving the real truth about the
miracle of dialysis treatment!
We had some great help from Medical Magnet School students who came out to volunteer their helping
hands in setting up / breaking down and taking some load off all of us!
We’re not in our twenties anymore!!!
Many thanks to Bob Swanson “Give a Life Foundation” who donated the cost of the t-shirts and to
Ron Lurie of Baron Marketing for providing them at a nice discount.
Thanks to Park Ave. BBQ for providing a great lunch at a fair price.
There are many who donate funds for this event but some people can’t help but stand out like board
member Ron London who goes door to door in his development to collect donations. They never turn
him down cause he has the charm! Two others that have the gift also are Victor Kislak and
Nina Mitzelfeld. Between the three of them they raised almost half of what was donated.
Many others are involved in different ways, Board Member Carolyn Marquis creatively puts together several baskets to give away as well as the silent auction/raffle table and the lunch process! The
“Mahvelous Marthas” jumped in and helped wherever needed.
It was a wonderful day of raising funds for the rest of the year’s events and programs!!!
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Jan, Feb, March 2014 KASF Newsletter
Jane Eckler & Snickers!
“The Mahvelous Marthas”
This fine looking group of gals will jump in
and help wherever needed, including creating
some great giveaway baskets!
The crowd is all ears while Pat Feely shares
her many years as a dialysis nurse.
The famous basket raffle is lined up and
ready!!
This is Sylvia, a pre-dialysis patient who
called us for help just weeks before the walk.
We invited her to the walk where we thought
she could learn more by socializing with
other patients. She was so grateful she made
a speech in front of everybody which in itself
made the WALK worth it!
New friends, Metabolic Research Institute
reps, Martha and Jenny with Pres. KASF
Ron Swords.
Thanks for the support!
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Jan, Feb, March 2014 KASF Newsletter
Board Member Jan Symonette, Supporter
Nina Mitzelfeld, Board Member Jill Morris
Vice President Karen Simmons and Hubby
Board Members Ron & Leona London
Board Member Julie Glennon
and Husband Steve
VP Worth Builders, Tom Keller
checking out the silent auction.
Victor Kislak and President Ron Swords
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Jan, Feb, March 2014 KASF Newsletter
Happy Walkers
Pat Feeley & Pres. Ron
Overtown Youth Center in Miami donated
Alonzo Mourning’s signed autobiography
and Heat tickets.
Selina Hodge, Karen Simmons, Art Mongo
“Uncle Doug Swords” admiring a beautiful
orchid donated from the “Orchid Doctor” at
the Gardens Green Mkt.
Thanks to Board Member Carolyn Marquis
(Right), the silent auction / raffle , BBQ
lunch went without a hitch!
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Jan, Feb, March 2014 KASF Newsletter
Here are some inspiring letters from the Medical Magnet
School Students after experiencing Walk in the Park!
They volunteered at our 5th annual event.
Thanks to Karen Simmons for recruiting the students!!
Walking with people who are glad of being in this world
and are grateful for life was very fulfilling. Just being
there and feeling the energy and excitement of the patients
and coordinators was exciting. Our guidance was very
good and the patients were very friendly. It was also nice
to have my friends there so we could all enjoy their spirits. The raffle was very entertaining, since they were all
so excited, and I think we can all agree the food was
amazing.
I got the chance to speak with one of the patients, Arthur
James Mongo. He was a very philosophical man but at
the same time interested and supportive of our carreers.
The walk was the most enjoyable part. We all got to talk
while we walked and we had some nice conversations that
brought us closer together. It was also very nice to see
that the patients enjoyed themselves. It was a very invigorating experience and I would love to help again.
Unknown
It was an honor to volunteer at the kidney association of
South Florida’s 5th annual “WALK 5” event on Saturday, February 22, 2014. It was through this event that I
had the pleasure of meeting patients and caregivers. The
walk was very enjoyable and reinforced the goal of
health and well being. It was also very enlightening to
hear patients speak about how long they have been part
of the Kidney Association of South Florida and how
much they’ve enjoyed it.
As someone who aspires to one day work in the health
field I learn about the diseases of the kidney. However,
seeing it in the textbook and meeting people who are actually living with the diseases were two different things. It
made it a reality and allowed me to view it with faces.
As said by one of the speakers, movies and television
gives the public a bad view of dialysis. I now know thatpatients can and have lived for many years on dialysis.
If I noticed nothing else from that day it would have been
enough to see the relationships within the Kidney Association. They are not only an association with patients
helping patients, but they are also a family. Thank you
for allowing my involvement in the “WALK 5” event.
Daphney
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Jan, Feb, March 2014 KASF Newsletter
Before this past Sunday, I had never attended a walk for anything. I had always seen the
Announcements but I was never motivated. This time my friends decided to go so I thought it would be
a good idea. After having attended this event I saw how great it was and I was motivated to go to similar events. I think that it is an outstanding idea and that you are helping a lot of people. It was a good
way to promote awareness and to show kidney patients that they have people to count on.
During the event I was able to help out setting up encouraging signs along the trail. Afterwards when
the walk began I was able to speak with Mr. Mongo. I was inspired by his positive personality and his
friendliness. It was really nice to speak with someone who had gone through the experience of kidney
transplant and was still fighting. It relly showed that you can never give up. After the walk and lunch I
was able to assist in the raffle. I was really happy to see how everyone had pitched in for it and how
excited everyone looked. A couple of my friends won and we had a good laugh when Lico won an envelope with a dollar bill!
In the end, I had a wonderful day with my friends from school and I made a couple of new friends at
the event. It was a really positive experience and I learned some new things. I am looking forward to attending the event next year and seeing you all there.
Diane
I have never thought I could be moved so profoundly in such a short time. The individuals
that I met were positive, friendly and informative. One man, Arthur Mongo, talked to Diana
and I during the walk. He is a great man who is
genuinely interested in us and what we had to
say. We shared useful advice and experiences.
The walk was a great experience that I definitely
will be participating in. My friends and I thoroughly enjoyed it and it’s for a great cause. I
hope there will be an even bigger turnout next
year.
Lico
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Jan, Feb, March 2014 KASF Newsletter
SHARE YOUR SPARE,
KIDNEY TRANSPLANT FAIR
Resources and Links
January 19, 2014
Support
www.kasf.info Kidney Association of South Florida
www.aakp.org American Association of Kidney Patients
www.rsnhope Renal Support Network
www.patientslikeme.com Patients Like Me
www.nkf.com National Kidney Foundation
www.pkdcure.org Polycystic Kidney Disease
A day of learning and sharing!
It was truly an extraordinary day of inspiration and education
as Bob Swanson of “Give a Life Foundation” started off with
telling his story of getting a new heart several years ago then
recently meeting his donor family!
Florida Hospital Transplant institute (Orlando) brought their
professional team to West Palm Beach. They started by explaining the process of getting evaluated for acceptance, testing,
getting on a list, live donors, and the surgery.
Followed by the post care, medications and financial planning.
They had some great suggestions for raising funds should you
need to.
KASF had a patient panel comprised of new patients as well
as veteran patients. Jan Symonette shared her journey of 17
yrs. as a transplant patient as well as a dialysis patient.
Victor Kislak told of his appreciation of the gift of life which
he received a little over a year before.
Karen Simmons is a “lifealysis” patient that has gone through
many trials over the years with her faith being a guiding light
through it all.
Tiffany Pierce is relatively new to the dialysis world at 7
months but has a great attitude which will carry her through.
Arthur Mongo spoke of his history as a 2 time transplant
patient which was very inspiring.
Transplant
www.ustransplantethics.com
www.unos.org United Network for Organ Sharing
www.kidneyfund.org American Kidney Fund
www.kidneyregistry.com Donor / swap network
Dialysis
www.nxstage.com Nxstage Home Hemodialysis
www.davita.com Davita Dialysis
www.needymeds.org Prescription Help
www.medicinenet.com Prescription Help
www.kidney.niddk.nih.gov National Institute of Diabetes and Digestive and
Kidney Disorders
www.clinicscanhelp.org Home Medical Supplies
Medicare / Social Sec.
www.medicare.gov Medicare
www.healthcare.gov Health Insurance
www.ssa.gov Social Security
Diet / Nutrition
www.culinarykidneycooks.com
www.dialysisdiet.net
www.beatkidneydisease.com
Donations, In honor of, In memory of.
General:
Ralph Bassi
Metabolic Research Institute
Bob Winston
Transplant Program
Victor Kislak
Pat Feely
Village Tavern Fundraiser
Carole Mayer
Jan Symonette
In Memory of Rose Schmidt
Ron Swords
Special thanks to fellow board members and
friends who helped get the word out and make
this a memorable event
Art Mongo tells all about his special journey as
new patient, Tiffany-Wiggan Pierce looks on.
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Jan, Feb, March 2014 KASF Newsletter
President Ron Swords welcomes the attendees and
professionals from Florida Hospital.
Students from local Medical Magnet schools
From left: Rood Emmanuel (Inlet Grove), Yamilith
Santana (John I Leonard), Samantha Saint-Fluer (John I
Leonard), Karen Simmons (VP KASF), Adrian Thompson (Inlet Grove), Cy-Anne Small (Inlet Grove), Alisia
Gibbs (Inlet Grove)
The audience was always ready with questions they
hoped to get answered. They were not let down by Florida
Hospital Professionals.
Bob Swanson of “Give a Life Foundation” shares an inspiring story of his Heart Transplant and meeting his
donor family recently after many years.
Florida Hospital Transplant Institute, Orlando
From left: Margaret Thomas, BSN, RN, CCTC,
Michele Branham, Financial Coordinator,
Amy Crum, MSW, LCSW, CCTSW
Girihar Vedula, M.D.
Our patient panel consisted of people with very different
circumstances and inspiring journeys.
From left: Jan Symonette, Victor Kislak, Karen Simmons,
Tiffany-Wiggan Pierce, and Arthur Mongo.
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Jan, Feb, March 2014 KASF Newsletter
Kidney Association of South Florida
1764 N Congress Ave, Suite 205
West Palm Beach, Fl 33409
561-471-2588
NON PROFIT ORGANIZATION
US POSTAGE PAID
WEST PALM BEACH, FLORIDA
Permit No 1247
RETURN S ERVICE REQUESTED
Jackie M. Tripp, M.D.
Dermatology and Cutaneous Oncology
Board Certified
Melanoma Fellowship, NYU
(561) 819-6888
5130 Linton Blvd. Suite C1
Delray Bch.
12
Fax (561) 819-5448
www.trippdermatology.com
Jan, Feb, March 2014 KASF Newsletter