Defeat MSA New Zealand Trust’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.
The Legacy Grants program designates four levels of grants: $15,000 (Platinum), $10,000 (Gold), $5,000 (Silver) and $2,500 (Bronze). MSA research grants begin at the $10,000 level. Please email: firstname.lastname@example.org
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 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 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 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 (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!
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.
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.
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.
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
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 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!
DENISE RAE CRYDERMAN-WILLIAMS FUND FOR MSA BRAIN RESEARCH
Denise Rae Cryderman-Williams, 60, passed away December 21, 2016. Based on a cumulative series of seemingly unrelated but relentless medical issues beginning in 2011, Denise was finally diagnosed with Multiple System Atrophy on February 29, 2016 (Leap Day). She continued the fight to remain strong, both physically and emotionally, but with no cure and limited palliative options, Denise succumbed to the “storm raging in my body” less than 10 months after receiving the clinical diagnosis. Known by all as a compassionate and giving person, her immediate family did not hesitate in the decision to donate her brain to the Brain Research Network for the research that might eventually help others so afflicted. It also provided the definitive diagnosis of this debilitating neurodegenerative orphan disease. According to the report from Mayo Clinic’s Neuropathology Laboratory in Florida, Denise was afflicted with not one, but both types of MSA (MSA-C and MSA-P).
Denise was born on January 2, 1956 at St. John Hospital in Detroit but, due to her father’s occupation at the time, spent most of her pre-school years in northern Ohio–both Toledo and Fremont. The move back to Michigan in 1961 allowed Denise to attend the Fraser public schools from grades K-12 with graduation from Fraser High School in 1974. Part-time enrollment at Macomb Community College from 1974-1978 focused on business management and fashion merchandising. In 1985 Denise resumed her studies at MCC and earned her Associate in Arts degree in 1987.
A fast worker with a strong work ethic, Denise was never unemployed after her entry into the work force at age seventeen while still in school. She initially worked as a well-paid cashier for the former Farmer Jack Supermarket chain, both before and after graduation from high school. A brief stint at a high-end women’s clothing shop and many years as a full-time Mary Kay cosmetics consultant were a “good fit” but eventually gave way to management positions at JoAnn Fabric & Craft stores. Given Denise’s creative sewing talents, strong work ethic and gifted management skills, she did well in the stressful world of retail sales. However, she often voiced her need for “me time” alone at home working on treasured sewing and craft projects to recharge for the next day.
In addition, Denise’s genuine compassionate and giving nature toward others found another outlet as a dedicated part-time Weight Watchers instructor and modest role model for those, like herself, who always had a few pounds they wanted to shed. In that role, she became an expert on food and nutrition and healthy eating habits. Denise loved her flock and they loved her! Given the approximately 20-year relationship, it was hard for her to leave her Weight Watchers family when worsening medical issues made it difficult, then impossible, to orchestrate her weekly Saturday morning WW class.
Her physical decline was doubly difficult as Denise had been physically active for most of her life in fitness facilities, competitive running events and short- and long-distance bicycling activities with family, friends and like-minded others. She was survived by husband Billy Williams; parents Sandra Studebaker and Raymond Cryderman; daughter Diane; step-children: Amber and Dale; granddaughters: Dakota, Lexi and Charlotte. She was preceded in death by her brother Curtis Cryderman (1963-2004) and by Robert Kosen (1949-2012), her previous husband of almost 20 years.
The Denise Rae Cryderman-Williams Fund (gold) was established by her mother Sandra Studebaker, in loving memory of her daughter, Denise.
DEBRA PINKSTON FUND
More information to be available shortly.
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