Help us raise money to find a cure for ALS!
|Event:||Western Maryland Walk|
|Date:||Saturday, October 7, 2023|
Our Family’s Story:
In 2011, our team Mary’s Marchers participated in the Western MD Walk for the first time in honor of our sister Mary who had been diagnosed with ALS in 2009. Before forming our team, we asked Mary for her permission to name the team in her honor with a team goal of $7,000 – this amount was a symbolic nod to the fact that there are 7 of us – yes, 7 sisters – and no, no brothers.
Mary loved the idea and loved the name but thought the goal of $7,000 was just way too high! But through the generosity of family and friends we raised close to $17,000 that year with a team of 40 walkers. Although Mary wasn’t able to participate in person, we facetimed with her from the Walk and she was incredibly touched by the love and support. It became clear that day that our team Mary’s Marchers would continue to ‘march’ every year until a cure was found. Little did we know what was to come.
When Mary was diagnosed with ALS in 2009, our family was devastated. Since we had no family history of ALS, Mary’s case was classified as sporadic – a case occurring randomly – and accounting for 90% of the known cases. Mary virtually participated with us in 3 Western MD Walks in her honor. We lost our sweet Mary in December 2013 after a courageous 4.5 year fight. So…for 5 more years, Mary’s Marchers worked year round to raise donations so that we could again participate in the Walk but now…they would be in her memory.
In 2018, our family was sucker punched again when our sister Patty shared that she had received a confirmed diagnosis of ALS. This was unfathomable and concerning for an obvious reason – Patty’s case was classified as familial – a case affecting multiple people in the same family – accounting for the remaining 10% of known cases. We lost our softhearted Patty in April 2020 after a too short 2.5 year fight.
Although Mary did not do any genetic testing since her diagnosis was considered sporadic, Patty did have genetic testing done. Through this testing one gene linked (to less than 20% of familial ALS cases) was returned with a finding of “variant of unknown significance”. Yes, you heard that right - a potential ‘defect’ in one gene out of the 22,000 genes that every human being has - was identified as the possible cause of our family’s link to ALS.
In 2021, our family was dealt a third unfathomable blow when Teri was diagnosed with ALS. Since the loss of Mary (Teri’s identical twin), Teri had been living with the fear that she would develop ALS and indeed, the worst happened.
Like Mary and Patty, Teri is handling the diagnosis with faith and grace (and grit). In 2022, Teri participated in a clinical trial, the Healey Platform Study - the first ALS platform trial accelerating the path to new ALS therapies by testing multiple treatments at once. Although we don’t know if she received the drug or the placebo, Teri’s doctor did note that her progression appeared slower than others. We continue to pray for a slow progression – or a miracle to halt progression. Teri is still active and continues to co-captain Mary’s Marchers – she is resolute in her commitment to beat this beast of a disease.
Participating in the annual ALS Walk continues to be one way that our family works to make a difference. But in addition, multiple members of our family are participating in a multi-year study at Mass General Hospital in Boston. This study follows people with gene mutations (even if they aren’t experiencing symptoms) to identify what delays onset, when to start gene therapies and what factors can help prevent onset. Our family hopes that this study will give researchers new information and help lead to a cure.
This disease is relentless and doesn’t discriminate. The Western MD Walk is a day that we come together to support each other – whether you are living with ALS, have a friend or family member living with ALS, or have lost someone to ALS – don’t give up the fight. Continue to raise awareness and continue to raise money to support research to find a cure. It does make a difference. We WILL make a difference. We HAVE to make a difference…because too many lives depend on it!
Why We Need Your Help
Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need.
Please help us make a difference. Our team is committed to raising money to support those living with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.