DEFEAT MSA LEGACY GRANTS

2018

Defeat MSA’s special Individual Named Legacy Grants program enables donors to fund a scientific research, medical education, patient support or public awareness grant and name it in their own name, in tribute to someone or in memory of a loved one. The Legacy Grants program designates four levels of grants: $15,000 (Platinum), $10,000 (Gold), $5,000 (Silver) and $2,500 (Bronze) in addition to matching Legacy Grants starter fundraisers at $500 each. Please email us: director@defeatmsa.org, if you are interested in finding out more about this lasting gift.

THE SIONG-CHI LIN LEGACY GRANT FOR MSA RESEARCH AND PATIENT SUPPORT

The Siong-Chi Lin Legacy Grant (Gold) 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 received funds raised by Dr. Lin’s son, Jeff, when he completed in the Philadelphia Marathon on November 19, 2017. All proceeds from Jeff’s run in the Marathon were donated to the Siong-Chi Lin Legacy Grant for MSA Research and Patient Support.  Help Us Defeat MSA – If you wish to support the Siong-Chi Lin MSA Research and Patient Support Fund, please donate now!

THE REY UMALI FUND FOR MULTIPLE SYSTEM ATROPHY

The Rey Umali Fund (Silver) 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: director@defeatmsa.org. An online store is coming soon!

THE JOSEPH GERARD FORTIER FUND FOR SLEEP AND MSA RESEARCH

The Joseph Gerard Fortier Fund for Sleep and MSA Research (Platinum) 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! Donate Now!

THE CHARLENE SOLEAU MSA PATIENT ADVOCACY FUND

Charlene Soleau (RIP) was a rare breed. Truly, it could be said that Charlene was a woman for all seasons: business owner, caregiver, social activist, mother, grandmother, great-grandmother and even spiritual mentor! Charlene devoted her entire life to helping others in need, even while battling the beast of MSA herself. The Charlene Soleau MSA Advocacy Fund (Bronze) honors Charlene’s life-long commitment to supporting people suffering with rare diseases, particularly those with MSA and other related neuro-degenerative disorders. To find out more about Charlene and how MSA affected her personally, please watch this short video, “It’s All in Your Head.”

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 (Silver) 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!

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 (Silver) 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 finished and the premiere will be announced soon!  Donate Now to Support the Susan Schnarndorf MSA Fund!

DEBBIE GRAHAM LEGACY FUND FOR CLINICAL MSA-C RESEARCH

If her friends and family had to choose one to word to describe Debbie, that word would be “selfless” – a personality trait that Debbie has demonstrated throughout her life.  

Debbie graduated in 1977 from Longview High School (Texas) after being a member of the drill team. During her professional career, she has worn many hats while working for attorneys and the court house. Some of her favorite hobbies are playing backgammon, reading Sandra Brown novels and traveling. The Dominican Republic and Chicago figure high on her list of most favorite places.

Tragically, two years ago, Debbie was diagnosed with a horrible disease called Multiple System Atrophy, a rare and rapidly progressive neurodegenerative disorder. MSA resembles Parkinson’s but patients with MSA experience more widespread damaging effects on the mind and body. There is currently no cure for MSA, no therapies known to slow its progression and very few drugs to manage its debilitating symptoms.

Since her diagnosis, Debbie’s health has rapidly declined. She has trouble walking (and is now restricted to a walker), she has problems with speaking (her words are slurred and unrecognizable), and she has difficulty doing normal everyday activities, just to take care of herself. Yet, despite this everyday struggle, she has remained in good spirits and continues to fight, with her husband Larry, standing by her along with the constant support of her two children, Whitney and Taylor.

The Debbie Graham Legacy Fund for Clinical MSA Research (Bronze) in partnership with Defeat MSA was established by Debbie’s children and family to support promising clinical research into new therapies, in the hope of finding medications that can truly help those suffering with Multiple System Atrophy now.  Donate Now!

The Douglas Bettenhausen Fund for Research and Medical Education

The Douglas Bettenhausen Fund for Research and Medical Education (Silver) was established by Doug’s family in his memory and in honor of his work in pharmaceutical medical education.

Doug was first and foremost a father, husband, son, brother, and friend who lived his life by Biblical principles.  He is remembered for his athleticism, his smile, his quick wit and his laughter.  Doug was also a Doctor of Pharmacy (PharmD) whose career was devoted to educating medical professionals on the proper use of drugs to treat disease.  He passed away at age 50, after a long and determined battle against MSA.  During his journey, Doug was frustrated by the lack of a diagnostic tool specific to MSA, the lack of effective treatment, and the scarcity of knowledge about the disease within the medical community.  The Doug Bettenhausen Fund for Research and Medical Education will contribute to desperately needed research and education.  Please Donate Now! Please donate and help us Defeat MSA!

The Raymond Massaccesi research and medical education fund

“Ray” Massaccesi, born in Chicago, Illinois in 1938, passed away at home in Ann Arbor, Michigan, in October of 2017 from complications of Multiple System Atrophy (MSA-P). An inventor and entrepreneur, Raymond’s professional focus remained mostly in industrial design, product design, and architecture, but he also had a strong connection with art – from sketching, to pottery as a member of the Ann Arbor Potters’ Guild, to building prototypes of products, and much more. He served in the army as a Staff Sergeant and also worked on a surveyor team. In addition to patents on products he designed, and copyrights, his leisure passions and interests included travel, gardening, reading, participating in and watching sports, skiing and dancing. The Ray Massaccesi MSA Fund (Silver) is dedicated to supporting promising clinical research.

Ray was one of the kindest people you would ever know. Encouraging and supporting, he had a captivating smile, a love for hugs (especially from his wife, children and grandchildren), a love of nature, and a slightly devious sense of humor. He put others’ feelings first and he didn’t sweat the small stuff, focusing on what really mattered. A “humble” and accomplished man who held a myriad of awards and acknowledgements throughout his life, he never put himself in the lime-light in front of others. His family meant everything to him. Raymond is greatly missed by his family and friends. Please support the Ray Massaccesi Fund.

Denise Rae Cryderman-Williams fund for MSA brain research

Information regarding this fund will be provided shortly.

OUR NEED IS DIRE, OUR CAUSE IS URGENT AND OUR FIGHT IS JUST BEGINNING!