Photos in order from left to right: Glynis Murray, Hugh Macdonnell, Brian Wallach, Lisa Cross Bonahoom, Jamey Spakes.
The ALS Therapy Development Institute (ALS TDI) is proud to announce the 2019 Leadership Award recipients. The ALS TDI Leadership Awards are presented each year to honor those who lead us in the battle against ALS. This year's recipients include Brian Wallach, Glynis Murray, Lisa Cross Bonahoom, Jamey Spakes and Hugh Macdonnell. The recipients were chosen from nominations made by members of the ALS community.
Stephen Heywood Patients Today Award—Brian Wallach
This award is presented to a person with ALS who has been an exemplary community advocate for ALS research and awareness. They are knowledgeable of current research, willing to inform the community about research trends and advancements, and eager to serve as an educator for those unfamiliar with ALS. They challenge ALS researchers to remain firmly planted within the ALS community and focus on people with ALS today, in the hope of accelerating treatments and cures as quickly as possible. This person is a role model for people with ALS, encouraging them to find the strength and determination to fight this disease through research each and every day.
Since he was diagnosed with ALS at the end of 2017 at the age of 37, Brian Wallach has been pushing the boundaries of how ALS is seen not just from within the community, but in the world. Last year, along with his wife Sandra, Brian founded I AM ALS, a patient-led, patient centric community with a goal to reshape public understanding of this disease, provide key resources to the community, and create opportunities for patients to lead the fight against ALS and search for a cure. When Brian is not traveling, he has been seen on The Today Show, in People Magazine, walking the streets of Chicago in a kilt, and all over the internet as a huge advocate for ALS. Most importantly, he is the father to two young, beautiful girls.
Stephen Milne Adventurous Spirit Award—Glynis Murray
This award is presented to a member of the ALS community who strives to find new and innovative ways to fundraise, advocate, and raise awareness for ALS research. The recipient of this award constantly explores bold new approaches to engage others in the fight to end ALS. They are driven by a commitment to excellence in ALS advocacy as they inspire their community to support the mission of the ALS Therapy Development Institute.
There are very few people who work as hard at spreading awareness than Glynis Murray. The love of her life and husband, Vince, was diagnosed with ALS the day before their wedding and passed just two years later. Now, she flies around the country to support ALS fundraisers—dressing like a dinosaur, training K9 gladiators, planning bar crawls, singing in the car, and even getting a pepper tattoo to support the #ALSPepperChallenge! She continues to work tirelessly for the cause to make sure that no one else loses the ones they love to ALS.
Mary Lou Krauseneck Courage & Love Award—Lisa Cross Bonahoom & Jamey Spakes
This award is presented to a member of the ALS community who demonstrates unwavering courage and optimism. The recipient of this award selflessly leads by example to uplift and inspire those around them. They believe in the power of positivity and remain committed to finding treatments for ALS. This individual consistently serves as a model of strength, courage, and love in the ALS community.
Lisa Cross Bonahoom was the first in her family to get ALS, as they soon found out they have a familial version of the disease when another sister was in the process of being diagnosed. Along with helping her sister through the diagnosis process, Lisa is actively working to help find treatments by volunteering her genes as well as her time at different fundraising events. Her courage and energy have led many friends to give time and money to the cause. Her warmth and love for life inspires hope in others as they continue to fight to end ALS.
The love that Jamey Spakes has for his wife Alison, and the ALS community, is evident in everything he does. Jamey founded the 447 Foundation, in honor of the mere 447 days that Alison lived with this dreadful disease. Each year, Jamey holds a huge golf event to support the research here at ALS TDI. Many in the community know Jamey for his kindness and generosity; as he donates to every Facebook birthday fundraiser, and reaches out to help any time a person with ALS needs help.
Fran Delaney Challenge & Respect Award—Hugh Macdonnell
This award is presented to a member of the ALS community who has shown true leadership by engaging the community to advocate for, and accelerate, research. Through involvement in fundraising and awareness events, this person demonstrates unique ability to organize and inspire others to help end ALS. They challenge those around them to join the fight against ALS, and actively spread awareness of the ALS Therapy Development Institute’s work and mission.
Hugh Macdonnell lost his mother in law, Betty Anne Chapman, to ALS in 2013. Not only does Hugh’s entire family work to make sure others don’t suffer the loss theirs did, but he has marshalled scores of people in his community to join the fight. With Hugh’s help and leadership, the Tri-State Trek’s Team CRUSH ALS has raised over $1M for the research here at ALS TDI.
To learn more about the Leadership Summit or register to attend, click here.