The Myotonic community is an amazing network of volunteers and advocates who inspire us all with the work they do to advance Care and a Cure for DM. Each year at the Myotonic Annual Conference we honor those who are doing outstanding work with Community Leadership Awards.
Congratulations and an enormous “Thank you!” to this year’s winners!
Advocacy Champion Award Winner
Carolyn Valek: community member with the most outstanding contribution to promoting awareness of DM this year
Carolyn Valek is one of Myotonic’s original Phone Buddies. She uses her experience as a patient advocate to dispense critical information to those in need. Her warm personality and deep concern for the community help newcomers quickly feel at home.
Carolyn runs the Myotonic Ohio support group and is an integral part of our newly launched Virtual Caregivers Support Group. She is one of our most devoted advocates, calling representatives on Rare Disease Day, writing letters to Congress to support the Orphan Drug Act, and attending Myotonic Hill Days in Washington, DC.
Congratulations and thank you Carolyn!
Team Myotonic Volunteer Award Winner
Loraine Dressler: community member with the most outstanding contribution to ensuring that the people in the best position to help have the knowledge they need to make a difference
Loraine Dressler’s dedication to supporting the DM community and her glowing positivity make her an inspiration to others. Loraine runs Myotonic’s Orange County support group and will also be participating in Myotonic’s Virtual Caregivers Support Group.
She takes part in our Grandparents’ Day awareness and fundraising campaign and is a long-time advocate who has met with members of Congress to advocate for DM funding and has provided testimony on the impact DM has had on her family to the Social Security Administration.
Congratulations Loraine! You are wonderful!
Humanitarian Award Winners
Taylor and Eric Jensen: community members with the most outstanding contribution to amassing resources for Care and a Cure
Taylor and Eric Jensen are a formidable grassroots fundraising team. They have turned their annual friends and family crawfish boil into a much anticipated and highly successful community celebration to support Care and a Cure. “Pinching Tails for a Cure,” has raised more than $110,000 since it began in 2013.
The Jensens also do all they can to help raise visibility for DM. They share their family’s story with reporters, participate in Myotonic awareness campaigns and speak at key events like the Ionis Pharmaceuticals Rare Disease Day employee event to help educate the world about DM.
Congratulations Taylor and Eric! We truly appreciate all you do!