GIVING
PROGRAMS
INDIVIDUAL
LEGACY GRANTS
Defeat MSA Canada special Individual NamedĀ Legacy GrantsĀ 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 $3,000, you can create a Defeat MSA Canada Legacy Grant, name it and establish your own criteria. Please email us: director@MSAcanada.ca, if you are interested in finding out more about this lasting gift.
OUR
LEGACIES

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.Ā 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.Ā A few years ago Dr. Lin was officially diagnosed with Multiple System Atrophy (MSA). Because the publicās 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. Linās son, Jeff, when he completed in the Philadelphia Marathon onĀ November 19, 2017. All proceeds from Jeffās run in the Marathon were donated to the Siong-Chi Lin Legacy Grant for MSA Research and Patient Support.Ā 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.Ā 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 USA, the Joseph Fortier Sleep and MSA Research Fund was established by Joeās extended family. Ā 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 āa person who is admired for his courage, outstanding achievements, or noble qualities.ā Ā Mike Boylan (RIP) was one man that exemplified those characteristics. Ā As business owner, community leader and a devoted family man, Mike showed us all the way we ought to live ā 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 āselflessā ā 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 Parkinsonās 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, Debbieās 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 USA was established by Debbieās 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
āRayā 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, Raymondās professional focus remained mostly in industrial design, product design, and architecture, but he also had a strong connection with art ā from sketching, to pottery as a member of the Ann Arbor Pottersā 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 othersā feelings first and he didnāt sweat the small stuff, focusing on what really mattered. A āhumbleā 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 (Gold) was established by Dougās 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.Ā He is remembered for his athleticism, his smile, his quick wit and his laughter.Ā 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.Ā He passed away at age 50, after a long and determined battle against MSA.Ā 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.Ā 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. Ā 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 Masterās in Fine Arts at Fontbonne University, Rey was diagnosed with Multiple System Atrophy. Ā 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 ā from large colorful abstracts to smaller more detailed ones. Ā Reyās guiding motto now is: āIf thereās a will, thereās a way.ā Thankfully, there is no sign that Reyās will to paint for MSA will stop anytime soon. Ā For more information on Rey and his art, please visit his art page: Painting with MSA. Ā And if you are interested in acquiring a piece by Rey, please email us: director@MSAcanada.ca

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 Charleneās 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-40ās. Ā At 48 years old, she competed and won a silver medal in the 2016 Rio Paralympics as a swimmer on behalf ofĀ #TeamBrasil. Ā Susana continues to defy the odds ā 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. Ā In particular, the fund aims to help those MSA patients in Brazil and Latin American countries. A film about Susanaās life and experiences with MSA was completed in 2018. North America’s premiere was in April 2019 at the prestigious Atlanta Film Festival. Click here to see the trailer for this amazing film.
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 āstorm raging in my bodyā less than 10 months after receiving the clinical diagnosis.Ā 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 Clinicās Neuropathology Laboratory in Florida, Denise wasĀ 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 fatherās occupation at the time, spent most of her pre-school years in northern Ohioāboth 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 1974-1978Ā 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.Ā A brief stint at a high-end womenās clothing shop and many years as a full-time Mary Kay cosmetics consultant were a āgood fitā but eventually gave way to management positions at JoAnn Fabric & Craft stores. Given Deniseās 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 āme timeā alone at home working on treasured sewing and craft projects to recharge for the next day.
In addition, Deniseās 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.Ā Denise loved her flock and they loved her!Ā 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.

ANNE MARIE BRADY FUND FOR MSA RESEARCH
Anne Marie Brady (8 May 1949 – 19 July 2020) was a kind, patient and generous woman, with a beautiful, infectious smile that could brighten up any room. Always interested in helping others, she spent her career as a nurse and then a teacher. Anne Marie saw the good in everyone and made friends everywhere she went. She loved her husband and three children dearly. Becoming a grandmother to two baby girls was one of her greatest joys in life. Her family and friends will always cherish memories of her love of holidays, knitting, baking, reading, games, and being surrounded by loved ones. Ā
Anne Marie was diagnosed with MSA in January 2018. She maintained her positivity throughout her courageous battle with this illness.Ā The Anne Marie Brady Fund for MSA Research was established by the BradyĀ family, in their loving memory of Anne Marie. Her family hopes this fund will lead to more awareness of, and new discoveries in the treatment of, MSA.

GARNEAU FAMILY LEGACY FUND/FOND DE LA FAMILLE GARNEAU
Fond de la Famille Garneau pour la Recherche de lāAMS et la Connaissance de la Maladie / Garneau Family Legacy for MSA Research and Awareness
ValƩrie Garneau
La famille Garneau cāest toujours impliquĆ© dans le monde funĆ©raire canadien dāoù lāimportance pour eux que cette page soit bilingue./ The Garneau family has always been involved in the Canadian funeral world. It is important for them to help others in the community, throughout Canada.
Depuis 2 ans les mĆ©decins cherchent pourquoi ma santĆ© se dĆ©tĆ©riorait rapidement. Ā En mars 2020, 4 jours avant la pandĆ©mie, le diagnostic tombait. AprĆØs avoir Ć©liminĆ© plusieurs maladies, enfin nous avions trouvĆ©, cāest lāatrophie multisystemisĆ©e, une maladie trĆØs rare mieux connue par son acronyme lāAMS. Je suis une mĆØre de famille trĆØs impliquĆ©e dans tous les causes de mon milieu. Jāai Ć©tĆ© la premiĆØre prĆ©sidente de la Corporation des thanatologues du QuĆ©bec. Jāai toujours travaillĆ© plus de 50 heures par semaine comme directeur de funĆ©railles et jāai complĆ©tĆ© un diplĆ“me universitaire Je suis incapable de demeurer inactive longtemps. Mais cela Ć beaucoup changer.
Je ne sais pas combien de temps il me reste Ć vivre. Comme je le rĆ©pĆØte, il nāy aura pas de miracle pour moi, mais je peux et je veux aider les autres. Si je peux aider une seule personne, un seul conjoint, un seul enfant, mes objectifs de vie seront atteints.
For the past 2 years, the doctors have been looking for reasons why ValĆ©rieās health was deteriorating rapidly. In March 2020, 4 days before the pandemic, the diagnosis was established. After eliminating several diseases, the doctors concluded that the diagnosis was Multiple System Atrophy, a very rare disease better known by its acronym MSA. ValĆ©rieĀ is a mother who is very involved in many causes in my community. She was the first woman to become president of the Corporation des thanatologues du QuĆ©bec. She always worked more than 50 hours a week as a funeral director and has completed a university degree. Now, all that has changed, she is unable to remain active for long. Her life has changed significantly.
Speaking about her condition, ValĆ©rie explained: « I don’t know how much time I have left to live. As I said, there will be no miracle for me, but I will and want to help others. If I can help one person, one spouse, one child, my life goals will be achieved.Ā Ā»
AndrĆ© Garneau, 1948-2020:Ā Advocate of lāAMS/MSA
AndrĆ© est lāoncle de ValĆ©rie.Ā Complice de son pĆØre depuis lāenfance, il a toujours Ć©tĆ© proche de la famille.Ā DĆ©cĆ©dĆ© le 11 septembre 2020, dāun arrĆŖt cardiaque, lāĆ©pouse et les enfants de cet ancien militaire ont dĆ©cidĆ© en sa mĆ©moire de supporter la fondation vaincre lāAMS pour aider sa niĆØce.Ā AndrĆ© aurait dĆ©sirĆ© que la recherche continue et quāun mĆ©dicament soit trouvĆ© pour aider dans cette horrible maladie.
AndrĆ© is ValĆ©rie’s uncle. Close to her father since childhood, he has always been very connected to his family. He passed away on September 11, 2020, of a cardiac arrest. The wife and children of this airforce veteran decided, in his memory, to support the foundation fighting MSA to help his niece. AndrĆ© would have wished for research to continue and a drug to be found to help conquer this horrible disease.
If you wish to include us in your bequest, we propose some of this language for your attorneyās consideration. Upon your request, we can add your name and/or a memorial statement to our bequests page.
After fulfilling all other specific provisions, I give, devise and bequeath ____% of the rest, residuary and remainder to Defeat MSA Canada, a registered charitable organization (Number: 758784284RR0001) with offices at 3041 Dougall Avenue, Windsor, Ontario, Canada,Ā N9E 1S3. This gift shall be used as the board of directors determines the need is the greatest.
[or replacing the last sentence with this:āThis gift shall be used for the sole purpose of research, education or patient support as the board of directors designates.ā]
I give, devise and bequeath $___, ___% or _____ [name specific asset] to the Defeat MSA Canada,Ā a registered charitable organization (Number: 758784284RR0001) with offices at 3041 Dougall Avenue, Windsor, Ontario, Canada,Ā N9E 1S3. This gift shall be used as the board of directors determines the need is the greatest.
[or replacing the last sentence with this: āThis gift shall be used for the sole purpose of research, education or patient support as the board of directors designates.ā]
In the event of the death of any of the beneficiaries, I give, devise and bequeath ____% of the rest, residuary and remainder to the Defeat MSA Canada,Ā a registered charitable organization (Number: 758784284RR0001) with offices at 3041 Dougall Avenue, Windsor, Ontario, Canada,Ā N9E 1S3. This gift shall be used as the board of directors determines the need is the greatest.
[or replacing the last sentence with this: āThis gift shall be used for the sole purpose of research, education or patient support as the board of directors designates.ā]
If you wish to bequeath your donation to Defeat MSA Canada, a registered charitable organization (Number: 758784284RR0001) with offices at 3041 Dougall Avenue, Windsor, Ontario, Canada,Ā N9E 1S3, you may earmark it for patient and caregiver support, medical education, public awareness or scientific research (or divide your bequest into a part of each). Please see our page on Legacy Grants, if you wish to name your bequest after yourself or someone else. If you have questions, please call us: 586.246.1475 or email us: director@MSAcanada.ca
OUR NEED IS DIRE, OUR CAUSE IS URGENT. AND OUR FIGHT IS JUST BEGINNING!
LOOKING FOR OTHER WAYS TO GET INVOLVED?
JOIN THE MOVEMENT TOĀ #DEFEATMSA
Follow us on social media
Follow us on Twitter
Follow us on Facebook
Follow us on Instagram
Follow us on YouTube
Follow us on social media
Follow us on LinkedIn

Copyright 2020 | Defeat MSA CaNADA -Ā a REGISTERED CHARITABLE Organization |Ā PRIVACY POLICY
CREATEDBY |Ā RIOSMEDIA