Defeat MSA’s special Individual Named Legacy Grants program enables donors to fund a scientific research, education or patient support grant and name the grant in their own name, in tribute to or in memory of a loved one. For a minimum level of $5,000, you can create a Defeat MSA Legacy Grant, name it and establish your own criteria. Please email: DefeatMSA@gmail.com, if you are interested in finding out more about this lasting gift.  

DEFEAT MSA LEGACY GRANTS

2017

  ~ THE SIONG-CHI LIN LEGACY GRANT FOR MSA RESEARCH AND PATIENT SUPPORT The Siong-Chi Lin Legacy Grant is named in honor of Dr. Siong-Chi Lin, a retired Mayo Clinic physician. Dr. Lin has spent more than 30 years, treating thousands of patients. He has devoted his entire life to helping others, from troubled youths in New York City to caring for those afflicted with sleep and mental disorders at Mayo. A few years ago Dr. Lin was officially diagnosed with Multiple System Atrophy (MSA). Because the public’s attention is focused on more widely known diseases, Multiple System Atrophy is overlooked. MSA patients are confronted with a dim prognosis, lack the kind of patient support network that exists for patients with more common diseases and are left with few treatment options. The Siong-Chi Lin Legacy Grant will receive funds raised by Dr. Lin’s son, Jeff, as he competes in the Philadelphia Marathon on November 19, 2017. All proceeds from Jeff’s run in the Marathon will be donated to the Siong-Chi Lin Legacy Grant for MSA Research and Patient Support. Your gift is tax deductible. Help Us Defeat MSA – Help Support Jeff’s run in Honor of his dad, Siong-Chi, please donate via Jeff’s Youcaring Marathon page, here.  

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~ THE REY UMALI FUND FOR MULTIPLE SYSTEM ATROPHY The  Rey Umali Fund is named for 57-year old Rey Umali who has MSA.  Rey was born in the Philippines in 1960. After his family moved to the United States, he grew up in Saint Louis, Missouri. He attended Truman State University, studying graphic design and marketing. Umali worked in the graphic arts field for more than thirty years. He has received numerous awards including the American Graphic Design Award, the Arrow Award, the Quill Award and the Printing Industries of America Award. While pursuing a Master’s in Fine Arts at Fontbonne University, Rey was diagnosed with Multiple System Atrophy.  Since then, Rey has decided to dedicate all his energies to raising money to support those affected by MSA! Despite the challenge of living with a progressive and fatal disease, Rey spends 8-9 hours a day in the studio painting. He has painted over 100 pieces – from large colorful abstracts to smaller more detailed ones.  Rey’s guiding motto now is: “If there’s a will, there’s a way.” Thankfully, there is no sign that Rey’s will to paint for MSA will stop anytime soon.  For more information on Rey and his art, please visit his art page: Painting with MSA.  And if you are interested in acquiring a piece by Rey, please email us at: defeatmsa@gmail.com An online store is coming soon!  

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~ THE JOSEPH GERARD FORTIER FUND FOR SLEEP AND MSA RESEARCH The  Joseph Gerard Fortier Fund for Sleep and MSA Research is specifically geared toward supporting promising research into sleep disorders and Multiple System Atrophy. Joe Fortier dedicated more than 25 years in sleep research and patient care before he was ever diagnosed with Multiple System Atrophy. Recent research has posited a link between obstructive sleep apnea (OSA), REM behavior disorder (RBD) and the brain chemistry of MSA patients. Specifically, RBD is regarded as a likely early sign of MSA and possibly other synucleinopathies, a group of disorders characterized by abnormal accumulation of alpha-synuclein proteins in brain cells. Thus, detecting sleep problems could be a step toward earlier diagnoses. As a special tribute to Joe, as the founding inspiration for Defeat MSA, the Joseph Fortier Sleep and MSA Research Fund was established by Joe’s extended family.  Please help clinicians explore this promising new research into the sleep-MSA connection by donating to this special research fund!  

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          ~ THE CHARLENE SOLEAU MSA PATIENT ADVOCACY FUND Charlene Soleau is a rare breed. Truly, it could be said that Charlene is a woman for all seasons: business owner, caregiver, social activist, mother, grandmother, great-grandmother and even spiritual mentor! Charlene has devoted her life to helping others in need and continues to do so, despite suffering greatly from MSA herself. The Charlene Soleau MSA advocacy fund honors Charlene’s commitment to social justice for people suffering with rare diseases, particularly those with MSA and other related neuro-degenerative disorders. To find out more about Charlene and her very personal account of living with MSA, please watch this short video, “It’s All in Your Head.”  

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~ THE MIKE BOYLAN, SR. MSA SUPPORT FUND

The Oxford English dictionary defines a hero as “a person who is admired for his courage, outstanding achievements, or noble qualities.”  Mike Boylan is one man that exemplifies those characteristics.  As business owner, community leader and a devoted family man, Mike has shown us all the way we ought to live – with dignity, honor and a genuine respect for others.

Everyday, Mike is challenged just by living with MSA. In this vein, the Mike Boylan Fund aims to help those who suffer now with Multiple System Atrophy, by funding patient support programs and research geared toward slowing the disease. Help us improve the quality of life now for those suffering so much from MSA!

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~ THE SUSANA SCHNARNDORF FUND FOR MSA Susana Schnarndorf is a world champion triathlete and six time Ironman winner. She developed Multiple System Atrophy in her mid-40’s.  At 48 years old, she competed and won a silver medal in the 2016 Rio Paralympics as a swimmer on behalf of #TeamBrasil.  Susana continues to defy the odds – training, competing and staying positive, challenging herself to surpass her personal best, despite the enormous toll of MSA. The Susana Schnarndorf Fund for MSA is dedicated to medical research and supporting poorer patients in less developed regions of the world.  In particular, the fund aims to help those MSA patients in Brazil and Latin American countries. A film about Susana’s life and experiences with MSA is in the final editing phase.  Watch the film trailer about this amazing woman on the film’s Kickstarter page.

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Our need is dire, our cause is urgent and our fight is just beginning!