Giving Programs

The Defeat MSA New Zealand Trust 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 in NZD: $30,000 (Platinum), $20,000 (Gold), $10,000 (Silver) and $5,000 (Bronze). MSA research grants begin at the Gold level. Please email us: info@defeatmsa.org.nz

The funds listed below are from our Canadian partner.

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 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 diagnosed with Multiple System Atrophy. Recent research has shown that there is 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!

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

Everyday, Mike was 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 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.

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

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!