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GIVING
PROGRAMS

INDIVIDUAL
LEGACY GRANTS

Defeat MSA Alliance’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: $50,000 (Platinum), $30,000 (Gold), $10,000 (Silver) and $5,000(Bronze). Please email us: legacyfunds@defeatmsa.org, 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 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

 

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 Alliance, 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 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

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

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

 

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 FOR MULTIPLE SYSTEM ATROPHY

 

The Rey Umali Fund (Silver) is named for 57-year old Rey Umali who had MSA and passed in 2020.  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.  Rey 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 spent 8-9 hours a day in the studio painting. He painted over 100 pieces – from large colorful abstracts to smaller more detailed ones.  Rey’s guiding motto was: “If there’s a will, there’s a way.” For more information on Rey and his art, please visit his art blog page: Painting with MSA

THE CHARLENE SOLEAU MSA PATIENT ADVOCACY FUND

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

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 was completed and has been shown in several film festivals throughout the world. Stay tuned for more showings soon.  Watch the trailer here.

Donate Now to Support the Susan Schnarndorf MSA Fund!

DENISE RAE CRYDERMAN-WILLIAMS FUND FOR MSA BRAIN RESEARCH

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

DEBRA PINKSTON FUND

 

Debra Pinkston (RIP)

More information to be available shortly

 

LINDA ZENDER LEGACY FUND

LINDA ZENDER LEGACY FUND

 

Linda was born in San Francisco, California on March 18, 1962 to her loving parents, Robert and Norma Parrish. She is the middle child of three girls, between her sisters Laura, and Lisa. She was raised in Seattle, Washington and attended Queen Anne High school, class of 1980. Growing up, she cherished her time visiting family each year in California and Hawaii. She later attended college at Western Washington University and graduated in 1984. At Western, she met the love of her life, or as she would say the guy who made her laugh like no one else, Don Zender. They exchanged their marriage vows on December 9th, 1989 at Sacred Heart Church in Bellingham. They celebrated their 31st Wedding anniversary last December.

Linda and Don settled down in Seattle, where she worked as a Paralegal for over 16 years. In March of 1992, Linda and Don welcomed Monica Marie into the world. Linda was so excited to be a mother and was overwhelmed with joy to have Monica by her side. In 1995, Linda and Don celebrated the birth of their son, Lucas John. She was over the moon to have Luke, as she never had a brother and always wanted a little boy. Her perfect family was set.

She was an amazing, loving mother to both Monica and Luke, dedicating her time to volunteering in their classrooms, providing each of them with every opportunity, and teaching them the values they have grown into today as amazing, young adults. Linda donated her time to several different charitable organizations. She fostered many wonderful relationships, creating lifelong personal friends, whom she cherished to this day.

In 2007 Linda, Don and the kids built a beautiful second home in eastern Washington on the Columbia River. Better known as the “River House.” Over time, this became one of Linda’s favorite places to be. Like everywhere she went, she sparked many amazing friendships with families who lived in the community, now known as their “River Family.” Linda loved boating, sipping good wine, and soaking up the beautiful summers. Don and Linda cherished hosting their friends & family at the River, simply to celebrate and enjoy life with “No Have-To’s.” Many of her most favorite memories throughout her life were at the River House.

In 2015, Linda and Don celebrated Monica’s marriage to the love of her life, Marco. With the exchange of vows, a new extension of the family was added – the Gonzales family. Throughout the years, the two families celebrated countless holidays together, including multiple Christmases at the River. With the addition of Marco to her family, Linda quickly became an expert on the game of baseball. Her natural, endless support shined as she came to truly appreciate and love the game, especially with the trade that brought Marco and Monica to Seattle. Never to miss a home start when Marco was pitching, she loved nothing more than to be at the games to cheer him on.

In 2015, Linda began to notice balance issues. As her family searched for the root cause, their road eventually led to the confirmation of devastating news. She was diagnosed in 2016 with Multiple Systems Atrophy (MSA), a very rare neurodegenerative and autonomic disease. Being the fighter and giver that she is, both her and Don spent time at the Mayo Clinic in Rochester, MN to contribute to research in hopes of beating MSA. In 2017, she was selected to be one of 30 individuals in the world to partake in a clinical stem-cell trial to help find a cure. Linda fought MSA with the utmost courage, grace, and unconditional love. She will forever inspire us all with the strength she showed every day, and her unrelenting faith.

With Linda’s passing, her family celebrates that she is free of MSA and walking and dancing in Heaven, while watching over her entire family. We will never forget her smile that could light up a room, and the endless love that she always showed each of us. We will forever honor the incredible wife, mother, daughter, sister & friend she is. Linda will always be with us.

 

 

ROGER L. HALFORD, JR

ROGER L. HALFORD, JR

 

More information to be available shortly

 

MATTHEW YOST

MATTHEW YOST

 

Matthew Yost was a man of impeccable character. He was a family man who was strong, kind, selfless, and loved to serve others. So it makes sense that he worked and loved being in the food industry as an unbelievable chef for over 30 years. He loved his wife, three daughters and many grandchildren first and foremost. He enjoyed cooking, traveling, hunting, being outdoors and teaching his grandkids how to build a fire, drive the tractor, or roast s’mores.  Without a doubt he was the rock of his family and loved dearly.

Matt was diagnosed with MSA only a few years ago. His disease progressed very quickly but he never gave up. He was determined not to let MSA get the best of him. He went to all his therapies multiple times per week, he did his exercises at home, and continued to do the things he loved until the very end. He even participated in multiple clinical trials including ones in New York City. Even on his worst days with MSA, he continued to have a positive attitude with a desire and passion for helping find a cure and ways to help people navigate such an awful illness.

After he passed, Matt’s wishes included donating his brain for MSA research to give doctors an even better chance at getting more information and hopefully getting one step closer for a way to slow progression and find a possible cure.

He was a hero in life to everyone who loved him and he continues to be a hero after death to those who don’t know him. His fund is being set up to go towards more research and we pray that one day people won’t have to suffer from this disease the way that Matt, his family and many others have had to.

MARIE SACHIKO ASHMUS

MARIE SACHIKO ASHMUS

 

Marie Sachiko Ashmus (RIP)

 

More information to be available shortly

LAWRENCE WILSON

LAWRENCE WILSON

 

Lawrence Wilson (RIP)

 

More information to be available shortly

If you wish to include us in your bequest, we propose some of this language for your attorney’s 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 the Defeat MSA Alliance, a 501(c)(3) charitable corporation (Tax ID# 46-0661655) with offices at 29924 Jefferson Avenue, Saint Clair Shores, Michigan 48082. This gift shall be used as the board of trustees determines the need is the greatest.

[or replacing the last sentence with this:“This gift shall be used for the sole purpose of research, education or patient support as the board of trustees designates.”]

I give, devise and bequeath $___, ___% or _____ [name specific asset] to the Defeat MSA Alliance, a 501(c)(3) charitable corporation (Tax ID# 46-0661655) with offices at 29924 Jefferson Avenue, Saint Clair Shores, Michigan 48082. This gift shall be used as the board of trustees determines the need is the greatest.

[or replacing the last sentence with this: “This gift shall be used for the sole purpose of research, education or patient support as the board of trustees designates.”]

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 Alliance, a 501(c)(3) charitable corporation (Tax ID# 46-0661655) with offices at 29924 Jefferson Avenue, Saint Clair Shores, Michigan 48082. This gift shall be used as the board of trustees determines the need is the greatest.

[or replacing the last sentence with this: “This gift shall be used for the sole purpose of research, education or patient support as the board of trustees designates.”]

If you wish to bequeath your donation to Defeat MSA Alliance, 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@defeatmsa.org

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