Special - ALS Family Charitable Foundation

May 2015
Newsletter
Supporting Patient Programs & Research For Amyotrophic Lateral Sclerosis-Lou Gehrig’s Disease
P.O. Box 229 | Buzzards Bay, MA 02532-0229 | 22 Bates Road | Suite 202 | Mashpee, MA 02649
T 508.759.9696 | F 508.759.9606 | www.alsfamily.org
Foundation News
In This Issue
Message from the President
We’ve been busy here at the Foundation with numerous fundraising events and
helping local families in the area. We held our first ever “Life’s A Beach” Winter Beach
Party event in January which was a huge success as well as poker tournaments and
concerts to raise funds for A.L.S.
Here are a couple of highlights from the last few months on how we’ve been helping
families living with A.L.S.
Clarke Alderman and his daughter Kara visited our office
recently. Kara’s mom and Clarke’s wife, Cheryl, passed
away this fall after battling A.L.S. We were happy to see
them in high spirits after enduring such heartbreak. Clarke
has been keeping busy volunteering in his community while
Kara is a full time student studying Elementary Education.
Kara is a receipent of our Foundation’s Scholarship.
• Moya Brennan Concerts...P.2
• Life’s A Beach .................P.3
• 33 Variations Concert......P.4
• Poker Tournaments.........P.4
• Upcoming Events............P. 5-7
Special
Announcement
for all newsletter
recipients
Amy Truman is a young mom who is living with
A.L.S. She and her family enjoyed a trip to Disney
made possible through our Heath Millward Vacation
Fund. (Read more about families we have helped on page 6.)
To better serve our patients
We are also very grateful to Atlantic Subaru in Bourne,
MA. During the 2014 SUBARU share the love
EVENT, they partnered with us and donated $250 for
every new Subaru sold from November 21, 2014 to
January 2, 2015!
to discontinue our print
Kara and Clarke Alderman
and in lessening our
environmental impact, we
have made the decision
newsletter and transition
The Truman Family at Disney
We are beyond
thrilled that
Atlantic Subaru
made a donation
of $15,785 to
our Foundation.
Thank you Levon
Semerjian, Gegam
Sarkisian and the
entire team at
Atlantic Subaru.
District Manager Ken Scanzio with Tara Cronin, Mary Ann (Sciaba) Singersen
and Dealership President Levon Semerjian
to our web based e-news.
We look forward to keeping
you updated through
email and believe this will
have a positive impact
on maximizing our fundraising efforts. Please send
us your email address to
alsfamily@aol.com today to
join our e-news mailing list!
2 Great Nights of Moya Brennan’s Irish Christmas
We had a wonderful opportunity this holiday season to work with the lovely and
talented Moya Brennan and her band once again. Moya Brennan, the Voice of
Clannad and First Lady of Celtic Music, and bandmates, Cormac De Barra, Aisling
Jarvis, Graham Henderson and Dave Curley performed a seasonal show of
celebration and reflection at two beautiful venues.
The Wednesday, December 3, 2014 show held at the Cultural Center of Cape
Cod was a fundraiser for both our Foundation and the John F. Kennedy Hyannis
Museum. The show was amazing, the food (catered by Casual Gourmet) was
delicious and we truly enjoyed working with JFK Museum staffers Jennifer
Pappalardo and John Allen. Thank you as well to the Cultural Center of Cape
Cod’s Executive Director Bob Nash.
Special thanks to Layla Chalker for once again being our little light carrier
during event sponsor Thomas J. O’ Neill’s song, Keep the Light On, which
he penned in honor of the struggle those with A.L.S. face.
The Thursday, December 4, 2014 show was held at The Jane Pickens Theater
& Event Center in Newport, Rhode Island. Thank you to Kathy Staab and Linda
Levine from the Jane Pickens Theater for their assistance in planning this great
event in such a wonderful location. We were also honored to welcome the
Bauer family to participate in the show. Wendy is living with A.L.S. and her twin
daughters Tabitha and Samantha carried the lanterns down to the stage during
Moya’s rendition of Keep the Light On.
Special Thanks to Thomas J. O’Neill for making these events possible.
PhotoCourtesy of
Ron Schloerb /Cape Cod Times
2 A.L.S. Family Charitable Foundation Newsletter / May 2015
PhotoCourtesy of
Ron Schloerb /Cape Cod Times
Thanks to everyone who came out to Dino’s Sports Bar on January
24th for our...
What a Blast! We had an awesome
turnout at our first ever “Life’s A Beach”
Winter Beach Party Fundraiser on
Saturday, January 24th. This event
packed the house at Dino’s Sports
Bar in Mashpee, MA. Over 150 people
braved the elements, dressed up in their best beach attire and enjoyed
live music and dancing with the Baha Brother’s performing all night.
We even had a limbo contest that became pretty competitive, as so many people entered. With tiki umbrellas, beach
balls being tossed, and eveyone wearing lei’s, it truly felt like we traveled back in time to July. The buffet was amazing
as well; the scallops wrapped in bacon and chicken wings were a huge hit. Thanks to eveyone who came out and
collectively helped us raise nearly $5,000!
Deepest gratitude to our “Big Kahuna” Sponsor, Dino Mitrokostas
of Dino’s Sports Bar in Mashpee, for his support.
Special thanks to the following sponsors
Thanks to: Joe Figueiredo, Tim Denmark, Salon 151, Marathon Sports, The Lanes Bowl & Bistro,
Colonial Wholesale Beverage, Brown Forman Liquors, United Liquors and L. Knife & Sons
A.L.S. Family.org 3
“33 Variations”
Benefits The A.L.S. Family Charitable Foundation
Thank you to David Kuehn, Executive Director of the Cotuit Center for the Arts!
We have worked with David in the past and have always been impressed with his
enthusiasm for the arts and their beautiful venue.
Last fall, they were performing “33 Variations,” a 2009 Tony Award-winning fictional
play by Moisés Kaufman simultaneously examining the process behind Beethoven’s
“Diabelli Variations” and the journey of Dr. Katherine Brandt, a musicologist, living
with A.L.S. and her relationship with her daughter.
David made our Foundation the beneficiary of their Sunday, October 5th Matinee.
Our patients were invited to see the show free of charge and we were thrilled
to participate in a “talk back” after the show with audience members, Foundation
employees and the actors.
Two Texas Hold’em Poker Tournaments
Our November, 9th 2014 charity poker tournament was a great
success raising over $4,000!
We had the room packed at Dino’s Sports Bar in Mashpee
and were happy to see so many players come out to play for
a great cause! We had a great time and raised funds for our
Foundation’s Children’s Program.
11/9/14 Top 3 Finishers
1st Place
Mike Cormier
2nd Place
Chris Leavitt
3rd Place
Eric Logan
3/1/15 Top 3 Finishers
On Sunday, March 1, 2015, nearly $3,000 was raised with
proceeds from the tournament benefiting the Foundation.
It was a great afternoon filled with a great crowd of poker
players. Special thanks to Mark & Deb Deering (above)
for their support in all our tournaments at Dino’s Sports Bar
in Mashpee!
Prize donors: Ninety-Nine Restaurants,
Napa Auto Parts, Walgreens of Mashpee,
Bobby Byrnes Pub in Hyannis, The Lanes
Bowl & Bistro, Marathon Sports, Dino’s
Sports Bar and Fazio’s Trattoria
4 A.L.S. Family Charitable Foundation Newsletter / May 2015
(Co)1st place
Nick LoDico
(Co)1st place
Jackson Ellis
3rd place
Dave Bealka
Upcoming Events
2014 / 2015 Sponsors
Current Live Auction Items!
Marshfield Country Club foursome
Oyster Harbors Club Foursome
Pocasset Golf Club Foursome
The Ridge Club foursome
New Seabury Country Club Foursome
Willowbend Country Club Foursome
TPC Boston Foursome
Polo Towers, Las Vegas Trip
One Week Stay at Harbor Island House
in Narragansett
Jewelry
A.L.S. Family.org 5
100 Miles in Memory of our Sunshine Cheryl Alderman
Our deepest thanks to Clarke Alderman and the Aging Like Fine Wine (ALFW) Cyclist
Club of Sutton, MA who are riding 100 miles in memory of Cheryl Alderman who was
considered the “Sunshine” of her family.
The ride will take place on Saturday June 13, 2015 and bicyclists will ride from
Yarmouth to Provincetown and back.
Cheryl’s husband, Clarke, a newcomer to ALFW and cycling, will be riding long distance for the first time. Cheryl and Clarke’s daughters, Elizabeth and Kara are excited
for their dad and will be cheering him on during this memorable day.
Proceeds from this event will benefit the A.L.S. Family Charitable Foundation.
If you would like to make a donation, please visit alfwrides.com
----Your Letters--Thank you for supporting our Foundation and
our mission to help families living with A.L.S.
through our in-house grant program. Here are
some excerpts from recent letters of thanks we’ve
received.
“Thank you so much for thinking of our family
during the Holiday Season. We appreciate your
generous gift to us.”–The Gregoire’s
The Irvine Family At Great Wolf Lodge
“Thank you for your continued support and your
generosity. The gift cards are truly appreciated
and helped make the kid’s Christmas better.”
–The Gilligan Family
“Thank you all from the bottom of our hearts and a very special thanks to Debbie Bell for all your help with my sister-inlaw Corinne who lost her battle with A.L.S. She was a very special person who touched everyone with her kindness and
beautiful soul. She will always be in our hearts, as will you who have done so much to help her and her family through
this horrible disease.” –The May Family
“Thank you for supporting and loving our family throughout the years! –The Whalen Family
“We had a great time at The Great Wolf Lodge this past weekend! Thank You to the A.L.S. Family Charitable
Foundation for making this getaway happen for us! The girls are still “Howling” about it!” –The Irvine’s
“You all have been so supportive emotionally and financially to our family. We will never forget. We love you with our
broken hearts.” – The Alderman’s
“Thank you so much for your kind and generous gift to my brother. Organizations like yours give A.L.S. patients hope.
I cannot imagine where we would all be without the help, love and support you have shared with us.”
– The Avallon and Steffen Family.
“Thank you for everything. It was really huge to us that your organization was so generous to assist my family with the
financial assistance necessary for Mackenzie to afford to attend College. It was also a wonderful surprise to receive the
gift card you sent for my children for their back to school needs. We really appreciate all that you’ve done.” –The Dutton’s
6 A.L.S. Family Charitable Foundation Newsletter / May 2015
I
“Danny’s Run For A.L.S.” will once again be held at the Seaport Inn and Marina in
Fairhaven, MA. on Sunday, July 19, 2015.
Da
e mor y O
nny Perry
f
nM
March 2, 1929 March 22, 1995
Danny’s Run” is an annual motorcycle run and pig roast, now in it’s sixth year, held in loving
memory of Danny Perry (March 2, 1929 - March 22, 1995).
Danny was a beloved member of the New Bedford community and his memory lives on in the
lives of those he touched. The Perry family raises money for A.L.S. patients and their families
going through the same battle they faced in hopes of making the journey a little easier than the
one they had. This annual event is organized by Danny Perry’s daughter and Foundation Board
Member, Jacqueline Tome.
This year Acoustic Dynomite and The Kulprits and will be performing live as you enjoy an authentic Pig Roast.
There will also be numerous items to bid on in a Chinese Auction and a 50/50 Raffle.
Photography will be provided by Joe Figueiredo.
Registration is $15 at 10:30 AM Ride begins at 12:00 PM
Purchase Your Tickets Now: (508) 287-8779
We have numbers available
for this year’s
New Balance
Falmouth Road Race
On Sunday, August 16, 2015 the 43rd Annual New Balance Falmouth Road Race will take place from Woods
Hole to Falmouth Heights with over 11,000 runners participating. This race is one of the showcase events in
distance running and woven into the fabric of summer on Cape Cod.
We will have ten individuals volunteering to run on behalf of our Foundation. Each will set a goal to raise a minimum of $1,000. If you are interested in joining this group of runners, please call our office (508 759-9696), as soon
as possible. We would like to wish the following runners good luck on behalf of all of us here at the
A.L.S. Family Charitable Foundation.
Olivia Hamilton - “Privileged with the opportunity to run the Falmouth Road Race again this year through the A.L.S.
Family Charitable Foundation”
Rick Adams - “I am running the Falmouth Road Race in August with the hope to raise as much money as I can for
A.L.S.”
Traci Brun - “This year, I will be running the Falmouth Road Race with a goal to raise as much money as possible
for the A.L.S. Family Charitible Foundation”
Sarah Reed - “In honor of my grandfather, who passed in 2005 from A.L.S., I plan to run the 2015 Falmouth road
race and raise as much money as I can to help find a cure.”
Thanks as well to Tom Kass, Samantha Andrews, Hannah Hamilton, and Stacia Iveson.
A.L.S. Family.org 7
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P.O. Box 229
Buzzards Bay, MA 02532
22 Bates Road, Ste.202
Mashpee, MA 02649
We’re here to help. Please contact Patient Services
Coordinator, Debbie Bell to benefit from any of our services.
•The A. George Kerr Patient Program assists patients with
financial needs.
•The Heath Millward Vacation Fund provides patients and
their families with memorable excursions.
•The Children’s Program provides financial assistance for
expenses such as the holidays, back to school shopping
and summer camp.
•The Jan Ferrara Get Away for a Day Fund provides funds
for individuals or groups of patients or caregivers to enjoy
an outing of their choosing.
•The A.L.S. Family Charitable Foundation, Inc.
Scholarship Fund offsets the financial strain of a college
education for a child of an A.L.S. patient.
•The Respite Care Grant Program provides assistance for
respite care to patient caregivers.
•The Bobby Murray Communication Equipment Fund
provides support towards medical and communication devices.
“Cliff Walk®” proceeds fund the David M.
Dorfman Research Fund at ALSTDI, working to
develop effective therapeutics that stop A.L.S. as
soon as possible.
Dr. Robert Brown, Department Chair of Neurology
at the UMass Memorial Medical Center has
produced some of the most cutting-edge and
creative projects in A.L.S. research.
SAVE THE DATES
7th Annual A.L.S. “Drive Fore The Green” Charity Golf Classic
Monday, May 18, 2015
6th Annual “Danny’s Run” for A.L.S.
Motorcycle Run & Pig Roast
Sunday, July 19, 2015
19th Annual “Cliff Walk®” for A.L.S
Sponsored by Superior Rail & Iron Works
Sunday, September 13, 2015
No Limit Texas Hold’em Poker Tournament
Sunday, November 1, 2015
2nd Annual “Life’s A Beach” Winter Beach Party
Saturday, January 30, 2016
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