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.
Jack Patrick Russell (December 5, 1960 – August 7, 2024) was an American rock vocalist. He was a founding member of the hard rock band “Great White.” Russell was born in Montebello, California, on December 5, 1960. He passed away at 63 years of age, from Multiple System Atrophy.
Jack Patrick Russell — father, husband, cousin, uncle, and friend was loved and remembered for his sense of humor, exceptional zest for life, and unshakeable contribution to the rock and roll world where his legacy will forever thrive.
Join us in celebrating the life of Jack Russell by contributing to Defeat MSA’s Jack Russell Legacy Fund for MSA Research.
Michael Leigh Smith, 69, a resident of Lubbock, Texas, passed away on Saturday, June 3, 2023, at his home
Michael was born on April 5, 1954, in Jackson County, Missouri, the son of Van Royal Smith and Bonnie Amick Smith. Michael had a passion for cooking and this passion led him to getting a culinary arts degree. He loved Pespi and it wasn’t uncommon for him to drink his customary 12 pack a day. Music was his favorite thing of all. He tried to pursue a music career in the 1970’s but unfortunately things didn’t work out the way he would’ve wanted. He was, however, able to meet many famous acts before they were household names. He had a love for the Beatles, with John Lennon being his favorite. Michael had a true servant’s heart, as he loved serving his family, his church, and Defeat MSA Alliance.
Mike lived to find answers to the disease that plagued his life for over 15 years. He served faithfully as a patient advocate and board member for Defeat MSA Alliance. His desire to help was so great that even in death, he is still searching for answers. Michael so graciously donated his brain to research for this disease along with a large donation to help fund the continued work of the organization he loved so dearly.
He will be sadly missed and forever remembered by his wife of 28 years, Donna (Allen) Smith of Lubbock, Texas; his daughter, Jennifer Marie Torres (current board member of Defeat MSA Alliance) and husband J Isaias Torres of Lamesa, Texas; one stepson, Benjamin Lee Ammerman and wife Christa Ammerman of Phoenix, Arizona; six grandchildren, J Isaac Ray Torres, Analia Marie Torres, J Noah Michael Torres, Shay Marie Torres, Alexander Ammerman, and Maximus Ammerman; one sister, Pamela Howells (patient advocate for Defeat MSA Alliance) of Wasilla, Alaska; and two nephews Cameron Howells and Travis Howells.
Michael was preceded in death by his parents and one brother, Christopher Smith.
Kimberly A. (Hartley) Turner, 59, passed away Tuesday, May 7, 2024 at home surrounded by her loving family. She was the beloved wife of Eric J. Turner for 37 years. Born in Warwick, she was a daughter of the late James and Sandra (Neuschuez) Hartley, Sr. Kimberly was the loving mother of Dylan P. Turner (Gabriella), Kolby J. Turner (Savita) and Keegan H. Turner; sister of James Hartley, Jr. (Heidi) and Wendy Marot (Timothy). She is also survived by three nephews. Kimberly worked as a dialysis technician for RI Renal, she then opened a home day care while she raised her three boys and built long lasting relationships with her neighbors and their children, then worked as a dialysis technician for the VA Hospital in Providence.
The Kimberly Turner Legacy Fund is dedicated to fostering promising research and patient support programs.
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 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 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!
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.
“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 (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 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.
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”.
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, 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 (RIP)
More information to be available shortly
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.
More information to be available shortly
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 Ashmus was a resident of Bay Village, Ohio from 1974 until her death in 2021. Born and raised in Northeast Ohio, she was second generation Japanese American and one of Bay Village’s first Asian residents. Marie was a teacher in Bay from 1974 to 2008. During her tenure, she taught thousands of kids at Normandy, Westerly, and Bay Middle schools. She was one of the first teachers in the gifted and talented education (GATE) program in the school district, and taught third grade, first grade, and, for many years, kindergarten. So many Bay students got their great educational starts in her classroom! Marie also inspired older district students through the Bay High student aide externship. Through the externship, high school students could receive educational credit for helping a teacher in an elementary classroom. Marie welcomed dozens of high school students into her classroom and many of them ended up choosing education as a career.
Marie’s love for teaching was reflected in how adored she still is by her former students. Every time she set foot in any local establishment, especially the local supermarkets, she was approached by former students and parents and treated like a local celebrity. She was amazing at remembering her students and loved catching up with each of them.
Her expertise was recognized when, after nomination by her students’ parents, she became the very first K-12 classroom teacher to be named the Outstanding Alumnus of the Michigan State University College of Education. Every previous recipient of the honor had been a college professor or researcher, but Marie focused the spotlight on the teachers who apply creative and effective methods to classroom education.
Marie’s commitment to the community extended to her family life. Her husband, Keith, is a founder and longtime supporter of the Bay Village Foundation and her two kids plus her niece and nephew graduated from Bay High School.
In 2018, Marie was diagnosed with Multiple Systems Atrophy, a rare disease that interferes with the ability of the brain to manage the functions of the body that most of us take for granted—regulating blood pressure, balance, walking, swallowing, hand and finger coordination, digestion, and on and on. As she continued her brave fight against this debilitating disease, she received comfort and support from her fellow Bay Village residents and from the MSA community on the Defeat MSA Facebook pages. For more information about MSA, go to www.defeatmsa.org. Her goal has been to increase awareness of this terrible affliction, and her fund will advance this effort to educate others.
Lawrence Wilson (RIP)
More information to be available shortly
Gerard Michael Carroll, “Jerry”, was just 58 years young when he lost his battle with Multiple System Atrophy (MSA) in May of 2021. Born as the middle child in a family of seven children, Jerry was an easy-going, kind-hearted, and loving husband, father, brother, uncle, and friend. He was a 1981 graduate of Dunwoody High School (Georgia) and went on to earn a business management degree from West Georgia College. From 1985 to the spring of 2020, Jerry helped countless school and church groups raise money for their organizations with his fundraising business. His charismatic personality helped his clients achieve success, and he established hundreds of lasting friendships.
Throughout his entire life, Jerry devoted himself – his time, his talents, and his energy to his family. He leaves behind his wife of thirty-one years, Cindy, and their four young adult children: Ryan, Matt, Emily, and Conner. His leisure time was spent golfing or fishing, but he truly just loved coaching his children’s youth sports’ teams, watching them compete at the high school level, and jumping the ocean waves on family vacations.
In the spring of 2015 short episodes of dizziness, foot numbness, and tired, heavy limbs were the beginning signs of MSA, unbeknownst to Jerry. From 2016 to the spring of 2019, Jerry saw countless doctors only to come away with nothing – no diagnosis. Many illnesses and diseases were ruled out, but no one could put their finger on MSA. Finally, a specialist at Emory’s Brain Health Center (Atlanta) nailed it. But, with the diagnosis came the grim description of what lie ahead as well as that word – “terminal”. The dizzy spells increased; walking was a chore; blood pressure readings plummeted. The days of jogging, golfing, and fishing were over. Not only did the debilitating illness slowly take Jerry’s ability to walk from him, it led to the frustration of no longer being able to be an independent adult.
Jerry lost his battle exactly two years after his diagnosis and six years from the onset of his initial symptoms. With so little that can be done to help anyone diagnosed with MSA, it has become the goal of our family to raise money on an annual basis to support Defeat MSA Alliance’s goal to help fund more research. The Carroll family wants to help others in the future to not have to endure the physical, mental suffering and emotional suffering. More research is critically needed – please help the Carroll family help other families affected by MSA.
Edith “Dee” Huzar known as a mother, a sister, a grandmother, a friend, was also a MSA warrior that battled this rare disease for 7 years. Dee’s motto was ‘keep moving and live your life’ which helped her stay strong through the progression of her disease. MSA never defined her, she showed dignity, grace & strength as she lived with MSA.
Edith spent her life being a “helper”. This could be seen through her role at Alexion Pharmaceuticals, through the various committees she served on in her parish, she was always inviting a friend or family member over for holidays if they had nowhere to go. Edith was always eager and willing to share what it felt like to live with MSA. She hosted an MSA awareness walk in her neighborhood in 2021 & 2022. She participated in a study with BIDMC-Boston to aid in early detection of MSA. She participated in a drug trial through BioHaven Pharmaceuticals in hopes to slow down the progression of MSA. Dee also starred in a video created by BioHaven to assist healthcare professionals know how MSA feels from a patient & their families perspective. She also shared her journey as a patient as a panelist in a medical symposium in which medical providers were able to ask her questions. Edith donated her brain for further research to PrecisionMed.
Since Edith’s diagnosis her goal has been to raise awareness of MSA and its side effects on its victims. Her fund will help other patients and their families help navigate through this rare disease. Please keep fighting for those who can not. Please keep praying for a cure so others do not have to endure what Edith has. Your donations in her name will help continue her legacy of helping others.
Victoria had MSA. Victoria was much more to so many than the disease that would take her too soon.
This is a tribute from her daughter:
First let me start by saying, my mom was not Multiple Systems Atrophy (MSA). My mom, Victoria Lynn Davis Schneider, was young, in her mid-fifties, just starting to live the life she dreamed of. My mom finally was able to teach, sharing her talent of reading, arts, music, and drama with young children at a nursery school. She loved watching superhero movies, British comedies, and science fantasy movies. My mom always loved creating things, moving from painting figurines to making stationary cards. She started selling her crafts at area craft fairs- where her joy was not in the selling, but the sharing of ideas with other craft enthusiasts. My mom loved reading classic literature and science fiction, which she shared with her children. My mom was a proud grandma of five- sharing her love of crafts, photography, baking, and observing the outdoors. My mom was also a newlywed, marring a gentleman who brought the best out of her. Together, they enjoyed going to the ballet and musicals in Delaware, Philadelphia, and New York City. They regularly enjoyed taking walks in local parks, beaches, and gardens. Together, they loved taking their grandchildren to the zoo and aquarium. My mom proudly watched her grandchildren in performances and sporting events. This is the picture I would like for you to remember.
My mom first started noticing there was something wrong, when she would fall, unexpectedly. She became weak on her feet. Slowly, she started slurring her words. Nothing made sense. She and her husband went to one doctor’s appointment after another, test after test, with no answers. Her walking and speech became more noticeable, taking away her ability to teach. Finally, she saw a specialist, who diagnosed her with Multiple System Atrophy. She learned that there was no cure- with no known treatment or medication. She also learned that she would die from this disease, and only after death, could doctors confirm her diagnosis. She had between 2-7 years left to live.
Slowly, my mom went from a vibrant, flourishing newlywed, to someone who had trouble with daily activities and tasks. She worried that eventually, her body would give up on her. She would be alert, yet unable to vocalize her needs or wants. She spent her days, upstairs in her craft room, crafting, until she could no longer. She read and watched TV, until she started having double vision. Everyday, just to drink, eat, and communicate became a battle for her. She wanted to learn more about this disease and wanted to educate others. She shared information with others, including doctors, who had never heard of this horrible disease. One of her final wishes was to donate her brain to science, to further research efforts. She knew that her time was limited, but she wanted to help others who would come down the same path, to establish a firm diagnosis, develop treatment and finally to find a cure for MSA. When that fateful morning came, and she went home to the Lord, her husband and family shared MSA information to the treating doctor and nurses, who had not heard of it.
While my mom is not MSA, she doesn’t want others to walk alone. She remains with us in spirit, sending us daily reminders of her love. So, thank you for dedicating your time and support to help kick MSA. Thank you for helping individuals who are or will someday have MSA. With knowledge and research, someday, we can kick MSA.
-Elizabeth Farrell
Victoria’s sister, Emily Knowles, started the NoSto Defeats MSA 5K in 2021 to raise funds and much needed awareness within her hometown of North Stonington, CT. The rural town in South Eastern CT pulled together and raised close to $5,000. This year, we hope to top that amount with a professionally timed race on October 29.
Thank you to all who support our efforts.
In 2021, our beautiful mother was diagnosed with Multiple System Atrophy which robbed her of what should have been the best years of her life; her retirement and golden years to spend with her children and grandchildren. For two years, she bravely endured the horrors of this cruel and aggressive disease. On January 1, 2023 she passed away at the age of 73 at which time she was finally freed from a failing body that was no longer hers. She was an elegant, caring and passionate person; a mother to everyone. As sickly and weak as she was, she was still ever-beautiful, ever-angelic and ever-hopeful. Antoinette was a respected and dedicated college professor who loved to teach and mentor her international students. She was a mother of two adult children and a grandmother to two young grandchildren. She will always be loved by her family and those who had the pleasure of knowing her. To honor her legacy and help others, we kindly ask for your support by donating to Defeat MSA Alliance to help promote clinical research for new therapies and eventually a cure for this terrible, rare disease.
Kris Arges, an active mother of 4 and a full time nurse, received her diagnosis of MSA in October 2021 after developing a host of seemingly unrelated symptoms. Once started, they persisted relentlessly and only got worse over time. Early 2022 her symptoms forced her into disability at the age of 56. She had a longstanding position as a clinical research nurse and served as the lead of her group in Cardiac Imaging doing Clinical Trials. After 30 years as a research nurse, she began the difficult task of looking for clinical trials in which she, herself, could participate for this rare and elusive disease. She was shocked to find that there are few options for treatment and MSA research. She looked into what was happening at Mayo and read about the promising research of Dr. Wolfgang Singer whose completed phase-one research showed that disease progression of MSA could be slowed through the infusion of autologous mesenchymal stem cells. Now Dr. Singer is working on the next phase of this research. Kris, a true believer in evidence based medicine/treatment after a lifetime of research at Duke, readily sought to enter the phase II study at Mayo. Much to her disappointment, she learned that there are not enough resources to provide compassionate use after this trial is complete, as had been done in the Phase I study. Nevertheless, she has entered the Phase II study, which is placebo controlled. Kris, and others, are trying to raise enough funds such that all 70 patients in the trial can receive compassionate use of stem cells upon completion of participation. Monies collected through this legacy page will transform into a grant for Dr. Singer to be directed to Mayo’s Stem Cell lab for compassionate use in all participants in this study, and for further MSA research, performed or initiated by Dr. Singer. In June 2022, Professor Wolfgang Singer, MD was the recipient for the Bishop Golser Award 2022 for his landmark studies of biomarkers and stem cell therapies in Multiple System Atrophy.
Michael Leigh Smith, 69, a resident of Lubbock, Texas, passed away on Saturday, June 3, 2023, at his home.
Michael was born on April 5, 1954, in Jackson County, Missouri, the son of Van Royal Smith and Bonnie Amick Smith.
Michael had a passion for cooking and this passion led him to getting a culinary arts degree. He loved Pespi and it wasn’t uncommon for him to drink his customary 12 pack a day. Music was his favorite thing of all. He tried to pursue a music career in the 1970’s but unfortunately things didn’t work out the way he would’ve wanted. He was, however, able to meet many famous acts before they were household names. He had a love for the Beatles, with John Lennon being his favorite. Michael had a true servant’s heart, as he loved serving his family, his church, and Defeat MSA Alliance.
Mike lived to find answers to the disease that plagued his life for over 15 years. He served faithfully as a patient advocate and board member for Defeat MSA Alliance. His desire to help was so great that even in death, he is still searching for answers. Michael so graciously donated his brain to research for this disease along with a large donation to help fund the continued work of the organization he loved so dearly.
He will be sadly missed and forever remembered by his wife of 28 years, Donna (Allen) Smith of Lubbock, Texas; his daughter, Jennifer Marie Torres (current board member of Defeat MSA Alliance) and husband J Isaias Torres of Lamesa, Texas; one stepson, Benjamin Lee Ammerman and wife Christa Ammerman of Phoenix, Arizona; six grandchildren, J Isaac Ray Torres, Analia Marie Torres, J Noah Michael Torres, Shay Marie Torres, Alexander Ammerman, and Maximus Ammerman; one sister, Pamela Howells (patient advocate for Defeat MSA Alliance) of Wasilla, Alaska; and two nephews Cameron Howells and Travis Howells.
Michael was preceded in death by his parents and one brother, Christopher Smith.The Mike Smith Fund is dedicated to MSA research.
Defeat MSA Alliance was very sad to learn that Professor Gregor Wenning passed away 11th of February, 2024. Professor Wenning was director of the Clinical Neurobiology division at the University of Innsbruck in Austria. He was one of the greatest movement disorder experts of his generation, with particular interest in Multiple System Atrophy.
Professor Wenning was a brilliant mind and completely dedicated to the defeat of MSA. He spent over 30 years in the discipline and published numerous articles and books on MSA. In 2012, he volunteered to serve on Defeat MSA’s Scientific and Medical Advisory Board. His passing is a tremendous loss for the MSA community. We will miss him greatly.
Phil Fortier, who knew the Professor since 2009 and founded Defeat MSA Alliance (USA), MSA United International Consortium and four other nonprofits within the Consortium, has announced a Consortium-wide tribute fund.
Professor Wenning’s sincere hope was always to unite the world community and ultimately to defeat MSA forever. We seek to accomplish the same moral mission. Help us continue his work at Innsbruck and beyond!
_
+ May the Angels welcome Gregor to Paradise +
Eternal rest grant unto him, O Lord,
and let perpetual light shine upon him.
May he rest in peace. Amen. R.I.P.
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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