- Alsfamily.org

A.L.S. Family
Charitable Foundation, Inc.
April 2014
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
In This Issue
Foundation News
A Message from our President
We have been pretty busy the last few months at the Foundation. Thank you for
your donations to our annual appeal and for your support of our recent fundraising
endeavors!
Since our last “Cliff Walk”, Patient Services
Coordinator Debbie Bell, has been able to facilitate
45 grants, in the way of scholarships, heating costs,
vacation costs, rent payments and holiday expenses.
Recently in November, we assisted the Whalen
Family with vacation expenses. They took a
wonderful trip to Montreal to visit family and
celebrate a “Canadian style Thanksgiving”.
If you or someone you love is living with A.L.S. in
New England, please contact Debbie. She is a great
listener and resource. Please call our office 508-7599696 to speak with her.
The Whalen Family
Terry Chalker
Also, I’m pleased to make a
“Your Love & Support
few announcements regarding
over these many years
our Board. Our Foundation
has helped sustain our
has appointed Terry Chalker as
family and for that, Kath
Treasurer of our Board of
Directors. She has served on the & I are forever grateful.”
-Larry Whalen.
Board for 2 years and has been
a wonderful asset. Terry and her
husband, Mark, own Chalker Heating and Fuel of Cataumet, a full
service heating, cooling and fuel company.
We’ve also welcomed Jacqueline Tome and Corinne Wickel as new members to our
Board. Jacqueline Tome, a Comcast Technician from Fairhaven, has organized Danny’s
Run, a Motorcycle Run in Memory of her dad, Danny Perry of New Bedford for the past
5 years. Jacqueline says the reason she joined our board is
she “wanted to help others living with the same disease her
dad had and ensure that they are able to access resources
that weren’t available when her father was battling A.L.S.”
Corinne Wickel is from Mashpee and is the Owner/Broker
of Starboard Real Estate and also works with learning
disabled children at LIFE Inc. Corinne has been on our Golf
Tournament Committee for 3 years and became involved in
our cause after having lost one friend to A.L.S. and watching
Jacqueline Tome (right)
• Finn’s Ride...............P.1 &2
• Upcoming Events.....P.2-4
• Past Events.............. P.4-5
• Donations................. P.6-7
• Patients Like Me.......P. 7
two additional
friends battle
the disease
now. Corinne
says “Knowing
even one
person with
A.L.S. is knowing
one person too
many”.
Corinne Wickel
As always, we are here to help. Please
help us get the word out about our
Foundation anyway you can. Feel
free to share our name and what
we do on Facebook, Twitter, on ALS
Message Boards and bring some of
our brochures to your support groups,
friend’s houses and doctor’s visits.
Mary Ann (Sciaba) Singersen
Finn’s
cross country ride
for A.L.S.
In loving memory of Helen Schumacher
“Finn’s Cross Country
ride for A.L.S.” is a solo
motorcycle ride to benefit the
The A.George Kerr Patient
Fund.
continued on p.2
This coming May, Finn Westbrook, a young man from New Hampshire, will set out on a
cross country motorcycle road trip to raise much needed funds for The A. George Kerr
Patient Fund at our Foundation. Finn lost his grandmother, Helen Schumacher to the
disease on Valentine’s Day 2006, and wanted to do something to honor her and others
who have been struck by A.L.S.
Finn will make a stop at George “Papa G” Kerr’s favorite hangout, Archie’s Seabreeze in
Fort Pierce, FL on May 31st. Come on out and meet him if you’re in the area!
In loving memory of Helen Schumacher
Support Finn by making a tax deductable donation.
You can easily do so online by searching for
“Finn Westbrook” on Firstgiving.com.
Check Donations: Make checks payable to
A.L.S. Family Charitable Foundation, Inc.
P.O. Box 229
Buzzards Bay, MA 02532
Like Finn’s Ride on Facebook. Search for Finns CrossCountry Ride for ALS or stay up to date by checking in on
our website @alsfamily.org.
“
I chose the A.L.S. Family Charitable Foundation because they
are a very patient oriented organization. They fund research into
finding a cure or treatment for this terrible disease, but their
main focus is helping patients.
– Finn Westbrook
The A. George Kerr Patient
Fund of the A.L.S. Family
Charitable Foundation provides
financial assistance for patients
living with A.L.S. Grants have
included help with mortgage
and utility payments, as well
as day to day financial strains
experienced by patients living
with the challenges of A.L.S.
Upcoming Events
Saturday, May 10th
Mother’s Day “Cruise to Cure A.L.S.”
8tnhu a l
In Loving Memory of Joan E. MacLeod
The MacLeod family regrets
that the SS Lobster Roll is
not handicap accessible.
An
We are thrilled to once again have the MacLeod Family on board for our 8th Annual Mother’s Day
“Cruise to Cure A.L.S.”, to be held on Saturday, May 10, 2014. The event is held in Loving Memory of
Joan E. MacLeod, and features live entertainment with Cape Cod native, Amber Crowley, a raffle, a buffet
lunch and a 90 minute cruise around Sesuit Harbor in E. Dennis.
The buffet includes Lobster Savannah, Prime Rib, Vegetable Pasta Primavera and Chicken Caesar Salad.
Boarding the S.S. Lobster Roll will begin at 11:45 a.m. and the cruise takes place from 12:00 to 2:00 p.m. The
ticket price is $50 if purchased before April 21st and $55 thereafter. All tickets must be purchased by May 2nd,
space is limited!
This fundraiser makes a wonderful gift for your mom or a special “mom” in your life. Bring your best friend,
sister, favorite aunt or daughter and create a wonderful memory and a new tradition. Download a ticket order
form today to purchase tickets and/or a program book ad at alsfamily.org or call the office at 508-759-9696.
2 A.L.S. Family Charitable Foundation Newsletter / April 2014
Monday, May 19th
6th Annual
A.L.S. Drive Fore The Green Charity Golf Classic
Pocasset Golf Club
Shotgun Start 12:30 p.m. $175 per Person/$660 Foursome
(Individuals are welcome but foursomes will be given preference)
Scramble Format • Fantastic Prizes • Lunch & Dinner • Fun-filled Raffles • Live & Silent Auctions
Celebrity Auctioneer
Susan Wornick
The A.L.S. Family Charitable Foundation invites you to join us at our 6th Annual A.L.S. “Drive Fore The Green” Charity Golf
Classic on Monday, May 19, 2014 at the Pocasset Golf Club. Come and play one of the finest courses and enjoy one of the
most beautiful golf layouts on Cape Cod.
Cost is $175 per person or $660 per foursome. (Foursomes will be given preference)
The Tournament is a Scramble Format with a Shotgun start at 12:30 p.m. and registration begins at 10:30 a.m.
Sponsorships for this event are available. If interested, call the Foundation at 508-759-9696 or email us at [email protected].
Last year we raised over $52,000 as 120 golfers helped make it our most successful golfing event to date! Proceeds benefit
the Foundation’s Scholarship Program which offsets the financial strain of a college education for a child of an A.L.S. patient.
SIGN UP NOW!
For more information call 508-759-9696. Deadline: May 12, 2014
Thank you to the following sponsors
PC Class of ‘69 Animals (Team Bobby Murray)
Visit alsfamily.org for details
A.L.S. Family.org 3
Upcoming Events Cont.
Sunday July 20th
“Danny’s Run” For A.L.S
Motorcycle Run & Pig Roast!
Danny Perry
(March 2, 1929 March 22, 1995)
“Danny’s Run” is held in loving memory of Danny Perry. 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 is raising 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. For more information, call Jacqueline @ (508)-287-8779 or visit alsfamily.org/upcoming events.
Past Events
No Limit Texas Hold ‘em Charity Poker Tournament
held on November 10, 2013 at Dino’s Sports Bar Route 151, Mashpee, MA
Thanks everyone for the great turnout. We had 62 players who tested their luck and skill to compete for prizes at
your favorite sports bar. Let’s meet the winners!
6th Place-Jean Flynn
7th Place-Eddie Purdy
8th Place-Renaldo Andrade
9th Place-Joe Bono
10th Place- Hugh Merlino
1st place - Liz Waldman
2nd Place - Tricia Purdy
3rd Place - John Casanova
Prizes Donated By: NAPA Auto Parts of Falmouth, Pro Cuts of Mashpee, True Value, 99 Restaurants, and
Super Lube in Falmouth
Thank you to the following sponsors
Paul Peters Agency, Inc.
508-563-5029
A very special thanks to Mark Deering for all his help and support
The Mews 5k
held on November 24, 2013 is an annual road race hosted
every November by the Mews Tavern in Wakefield, Rhode
Island.
Kevin Alexander and two fellow classmates who are
second-year physical therapy students at the University
of Rhode Island ran on November 24th in honor of those
affected by A.L.S. We would like to thank them for raising
over $1,200 for our Foundation!
4 A.L.S. Family Charitable Foundation Newsletter / April 2014
Foundation President Mary Ann Singersen with
Kevin Alexander, Steve Pirri, and Deryl Pace
Moya Brennan Concert raises $13,000
held on November 29, 2013 at the Cotuit Center for the Arts
Thanks to all of those in attendance at our “Moya Brennan Irish Christmas” Concert held on Friday,
November 29th at the Cotuit Center for the Arts! This event was a huge success benefiting families
living with A.L.S. and the fight against Lou Gehrig’s Disease.
Moya Brennan together with Cormac De Barra, Aisling Jarvis, Feargal Murray, and Pat Mangan
performed, “An Irish Christmas”, a Celtic-inspired album of classic and contemporary songs and carols. We had a packed
house and raised over $13,000 for the Foundation. A special thank you to Laylah Chalker for adding a special touch to
the performance as well as Thomas J. O’Neill for writing the beautiful song “Keep The Light On” for our Foundation. The
reception that followed had a meet and greet with the artists and delicious hors d’oeuvres provided by Roche Bros and
desserts by Panera Bread and Cape Cod Lollicakes.
Our deepest gratitude to Thomas J. O’Neill for making this event possible
Thank you
to Woodruffs
Art Center in
Mashpee and
Santander
Bank in
Mashpee
for providing
ticket sales.
sponsored by:
A.L.S. Family.org 5
DONATIONS RECEIVED FROM JANUARY, 2013 – DECEMBER, 2013
In Memory Of:
Louise Antonangeli
Lynda Kenney
Helen Avery
Mary Avery Gessner
Jack Bindig
Mr. & Mrs. James Fagan
Susan Black
Linda Austin
Conway, Homer & Chin-Chaplin
Joyce Crowley
Mario Ferreira
Robert Freedman, M.D.
Paul Geick
Mr. & Mrs. Glenn Lavallee
Debbie Pacheco
Mr. & Mrs. John Wesley
Mr. & Mrs. Raymond Wilson
Selma Bluhm
Mr. & Mrs. Gerald Bluhm
Charles D. Buckley
Mr. & Mrs. Donald Fonseca
Linda Burge
Patricia Baylor
Wayne Butler
The Butler Family
Susan Carraggi
Joseph Carraggi
Margaret Cerulli
Karin Pontelandolfo
Nina Schumacher
Mr. James P. Chisholm, Jr.
James P. Chisholm, III
Gail C. Naumann
Beverly Cross
Cindy Parisien
Mary P. DeCaro
The DeCaro Family
Hunter Dixon
Kristina Paget
David M. Dorfman
Mr. & Mrs. Gerald Bickoff
The Dorfman Family
Linda Loew & Guy Miller
David Sandler/Peoples Lock, Inc.
Keith Woll
Erik Doty
Nancy Flamm
Richard Fanizzi
Norman J. McLaughlin
Brendan Nolan
Ship Builders Flower Fund
Janice Ferrara
The Ferrara Family
Carol Hickey
Superior Rail & Iron Works, Inc.
Thomas Flatley
The Flatley Foundation
Thomas J. O’Neill, Inc.
Mr. & Mrs. Grimes
Jean Concannon
Kimberly Myers Grimm
Leonetta Hoskins
Susan E. Harlfinger
Mr. & Mrs. Sandro Annese
David Batchelder
Mr. & Mrs. Michael Berry
Mr. & Mrs. Arthur Bruno
Paul Bruno
Margaret Cinfo
Dennett Elementary School
Janet Devine
Susan Doherty
Richard Enright
Kimberly Eriksson
Mr. & Mrs. Norman Ferguson
Mr. & Mrs. Richard Gauley
Mr. & Mrs. Donald Haley
Mr. & Mrs. Richard Hansen
Mr. & Mrs. Richard Harlfinger, Jr.
Mr. & Mrs. John Henry
William Holbrook
Amanda Holcomb
Mr. & Mrs. Charles Lawson
Linda Lawson
Patricia Leslie
Mr. & Mrs. Lawrence Marble, Jr.
Beth MacGillivray
Marshfield Agricultural and
Horticultural Society
Mr. & Mrs. John Milley
Mr. & Mrs. Richard Quimby
Quincy Sheet Metal Co.
Lorraine Norvish
Michelle Norvish
Donna Paula
Mr. & Mrs. Douglas Reese
Mr. & Mrs. Matt Ruxton
Richard Ruxton
Sharon Ruxton
Tim Sauchuk
Eliza Schacht
Miriam Sevingy
Jeanette Sheehan
Mr. & Mrs. David Walsh
Michelle Waters
Barbara Wood
Nicholas Katsiroubas
Kristina Paget
George Kerr
The Berube Family
Mr. & Mrs. Lawrence Kerr
Polly Forde Kiley
K.P. Kiley, Jr.
Martha L. Kreckler
Mr. & Mrs. Stephen Heffernan
John F. Kreckler
Frances LaMonica
Maureen Sheehan LaMonica
Edith Ann Lashley
John Menge
Jeffrey Lawrence
Laura Leal
Anne Lawrence
Caleb Lawrence
Robert Lloyd
Vic & Pam Desruisseaux
Catherine E. Lopez
Edward Lopez
Michael Lopez
Edward Lopez
Mr. & Mrs. Ronald Meehan
Joan MacLeod
Mr. & Mrs. Bill MacLeod
Margaret McLean
DKS Manomet Laundry, LLC
Rita McMahon
Donna Bradbury
Heath Millward
The Butler Family
Edith Mitchell
Sharon Mitchell
William E. O’Donnell
Helen O’Donnell
Mua’ Pa’u
Christopher Bueler
Matthew Chapman
Barbara DeLuca
Danny Perry
Ms. Pat Perry
Ms. Jacqueline Tome
Olga Haros
Mike Oyer
Audrey Jaffee
Bob Roth
Cliff Jordan, Jr.
John P. Scheid
Hendrika J.M. Quade
The Wilkes Family
Patricia Desmond
Mr. & Mrs. Cliff Jordan
Donna Jordan
6 A.L.S. Family Charitable Foundation Newsletter / April 2014
Robert Baker
Laura E. Roth
Kimberly Post
Gary Scheid
Brian Shelly
Edward J. Sciaba, Sr.
Allied Recycling Center
Anonymous
The Blakeney Family
Mr. & Mrs. John Davis
Rhode Island Recycled Metals
Adele Sciaba
M. Victor Sylvia
Mr. & Mrs. Edward Silvia
David Teixiera
Joanne Hadley
Bea Teixiera
Ed Tenn
Jacki Thomas
George N. Vagenas
Mary Vagenas
Delores Yered
George Yered
In Honor Of:
Connie & Jerry Amosson
Mr. & Mrs, Kent Volpe
John L. Berger
Alice Cowan
Shirley Blecher
Mr. & Mrs. Keith Decker
Ellen Corinida
Chatham High School Students
Beth Fitzpatrick
Punkin Chunkin Assoc.
Lawrence Gilligan
Mr. & Mrs. Richard Doucimo
Michael Gilligan
Mr. & Mrs. Kevin Makie
Natalie Morris
Charleton Middle School
Students
Grace LaPorta
Gabrielle Probert
Barbara Mahoney
William Hughan, Jr. & Lila Zale
Joanne Stearns
Mr. & Mrs. Alan Stearns
Dale Whitney
The Whitney Family
General Donations:
AT & T Employee Services Fund
Gateway Region
Auto Promo, Inc./Dave Wolf
Shannon Berube
Phyllis Bluhm
Sara Bysshe & Charles Cooper
Cape Cod Corvette Club
Chalker Heating & Fuel
Denmark Cleaning Services
DONATIONS RECEIVED FROM JANUARY, 2013 – DECEMBER, 2013 (Cont’d)
General Donations (cont’d):
Janet DePesa & Jay Sweeney
Edna High
Highland Street Foundation
Little Harbor Country Club
Women’s Golf Association
KLM Motorsports & Dale Wolbrink
Jerry Loew
Devon Lutz
Makepeace Neighborhood Fund
Cheryl Mathis
Roger D. McCrorie
Cheryl T. Mesti
Robert F. Pagano & Assoc.
David Phillips & April Stevens
Alexandra Roussell
South Coast Women’s Journal
Mr. Mark St. Jean
TD Bank
Timeless Designs, Inc.
Mr. & Mrs. Mario Vitti
Donations listed are general contributions; this list does not include
Event donations. General contributions and funds raised at events
help support our Foundation, patients and research throughout the
year, and we could not do what we do without them. Event donations
are too numerous to list on this page. So, if you are a general
contributor, an event contributor or both, on behalf of the A.L.S.
Family Charitable Foundation, please accept our most heartfelt and
unending gratitude for your compassion and your generosity.
If you would like to make a tax-deductible donation, please make
checks payable to the A.L.S. Family Charitable Foundation, P.O. Box
229, Buzzards Bay, MA 02532, or visit us online at www.alsfamily.org.
THANK YOU!
HOW YOU CAN HELP RAISE EVEN MORE FUNDS AT THE CLIFF WALK!!!
Our “Cliff Walk®” for A.L.S. Fundraiser is coming up on September 7th. If you’re living with
Lou Gehrig’s Disease or a caregiver for someone who is, you can help our foundation earn
donations (for your “Cliff Walk” team) from our friends at PatientsLikeMe.
PatientsLikeMe will SPONSOR your team!!!
WITH YOU EVERY STEP OF THE WAY
PatientsLikeMeInMotionTM
For the last few years, PatientsLikeMe has helped sponsor the Annual “Cliff Walk®” for A.L.S. Fundraiser, and this year they’d
like to help you and your team raise funds and spread awareness through PatientsLikeMeInMotion.
What’s PatientsLikeMeInMotion all about?
It’s all about giving back to the community – to everyone helping to raise awareness and funds for A.L.S. Since launching
in 2009, PatientsLikeMe has sponsored more than 254 teams and donated more than $57,500 to charities in the names of
people just like you. They also provide team t-shirts and more!
How can I get my team sponsored? (You have to be living with A.L.S. or a caregiver.)
It’s easy. Visit www.plmjoin.com/ALS and follow these three steps and you’re good to go!
1. Sign up for PatientsLikeMe
2. Complete your health profile to become a three-star member of the PatientsLIkeMe ALS Community
3. Submit your request for InMotion sponsorship Having three-stars means you’re a member of the ALS community on PatientsLikeMe that has an up-to-date health profile. The
real-world info you share is what’s helping drive new research and medical advancements that can help everyone living with ALS.
After you’ve signed up with patientslikeme, please email us at [email protected] and let us know!
A.L.S. Family.org 7
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PERMIT 3
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!
Archie’s Seabreeze of Fort Pierce, FL welcomes
Finn Westbrook for a stop along “Finn’s Cross Country
Ride for A.L.S.”
Saturday, May 31, 2014
Annual Mother’s Day “Cruise to Cure A.L.S.”
Saturday, May 10, 2014
A.L.S. Drive Fore the Green – Charity Golf Classic
Monday, May 19, 2014
“Danny’s Run” for A.L.S.
Sunday, July 20, 2014
18th Annual Cliff Walk For A.L.S.
Sunday, September 7, 2014
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