Topgolf Tournament for Myotonic
March 1, 2020 @ 10:00AM — 1:00PM Eastern Time (US & Canada)
Thank you for helping fund critical myotonic dystrophy research with group golf!
Thank You for Your Support!
The Topgolf Tournament for Myotonic has raised over $33,000! Thank you to our 150 friends, family, and fellow community members who were able to join us for a fun filled Sunday. We greatly appreciate every donation, team registration, silent auction bid and raffle ticket purchase which is helping further Myotonic's mission to enhance the quality of life of people living with myotonic dystophy and advance research focused on treatments and a cure. Find all our photos from Sunday on Facebook!
We are proud to announce "Slicers, not Hookers" as the winners of the first annual Topgolf Tournament for Myotonic! Congratulations to Abbie and Rick Green, Nick and Marcy Bloom, Jay Myers, and Tracy Reimbold who were able to secure a victory over the 17 other teams competing.
Join us next year! We hope everyone enjoyed themselves and can save the date and make it back out to the range for next year's Topgolf Tournament for Myotonic on February, 28, 2021!
Thank you for joining us for a great day of golf to celebrate Rare Disease Day 2020!
The event began on Sunday, March 1st at 10:00 AM with brunch and a tournament for over 150 participants, and wrapped up with an awards party and silent auction concluding at 1:00 PM. The event was a huge success and an exciting and entertaining day of great impact. The Myotonic Dystrophy Foundation (Myotonic) along with Paul & Sara Dillon’s family and friends are organized the event to raise awareness and much needed funding to support Myotonic's mission to enhance the quality of life of people living with myotonic dystrophy and advance research focused on treatments and a cure.
- Fun for golfers and non-golfers alike
- Join individually or recruit a team (6 per team)
- State of the art Topgolf facility in Columbus Ohio (Polaris area)
- Includes golf clubs (or bring your own), golf balls, scoring, lifetime membership, prizes, and brunch
- If you cannot participate, we hope you will consider making a tax deductible donation.
**The last day to reserve your spot in the tournament was February 21, 2020**
Questions about the fundraiser? Contact firstname.lastname@example.org.
About the Dillons
In May of 2018 our son Patrick was diagnosed with myotonic dystrophy type 1 (DM1) as a result of complications with his club feet. Since then Patrick’s sister, mother, grandmother, and 5 other extended relatives and counting have been diagnosed (with 28 others currently being tested). Thanks to Myotonic, we have become educated about the disease and helped family members understand the importance of getting tested.
As a result of Patrick’s diagnosis and the education from Myotonic several family members have improved their quality of life and life expectancy through cardio screenings and other treatments. We are hopeful there will be a cure for myotonic dystrophy, a degenerative form of Muscular Dystrophy whose symptoms and severity increase with age and grow more severe with each generation. Prognosis for both children (Patrick 3 in January and Katelynn now 5) is that they “will not be able to work when they are 20 due to cognitive and/or physical decline as a result of the disease.”
Patrick is a fighter! It is amazing what you can learn about your kids at such an early age. During Patrick’s treatment for club feet he was able to escape three leg casts extending to the top of his thigh and foot braces (orthopedic and orthotic specialists did not believe this was possible). These feats amazed Patrick’s medical team and they gave him the nickname “Houdini”.
Patrick’s parents have decided it is important to fight for their kids and family.Since being diagnosed Patrick’s parents have participated in:
- Fundraising: Facebook Giving Tuesday raised >$4,500 supported by family and friends
- Raising awareness: Starting at Ohio State University by organizing a medical roadshow for second and third year medical students (Planning to extend to other medical schools and continue at OSU)
- Supporting research : Participating in clinical trials and several patient registries
- Advocacy: Supporting Myotonic organization’s efforts for federal funding
- Support: Attending the annual conferences
and becoming a support group co-facilitator
Paul & Sara are dedicated to forwarding the mission of Myotonic to enhance the quality of life for people living with myotonic dystrophy and advance research focused on treatments and an eventual cure.
About Myotonic Dystrophy
Myotonic dystrophy (DM) is a multi-systemic inherited disease that affects at least 1 in 2,300 people (more than 150,000 in the US alone). DM is an under-diagnosed genetic disease, clinically described as a degenerative (symptoms become increasingly more severe later in life) with anticipation (disease symptoms tend to be more severe and occur earlier in successive generations). Myotonic dystrophy is a highly variable, multi-systemic genetic disorder for which no therapies or a cure currently exist. DM symptoms can range from serious cardiac and respiratory issues to significant and ongoing GI impairments, and permanent cognitive and emotional delays or deficits. More information is available at www.myotonic.org.
Hope for a Cure
- Diagnosis is clear: genetic testing provides accurate diagnosis.
- Mechanism of the disease is understood: not always known for other diseases
- Clinical trials are quite often difficult to recruit: myotonic dystrophy has better than average participation, supported by Myotonic’s Patient-Focused Drug Discovery (PFDD) connecting patients, university researchers, and the biotech industry
- Many genetic diseases do not have these advantages.Discoveries made researching myotonic dystrophy will help to advance cures for other genetic diseases.
Who We Are
Myotonic is the world's largest patient organization focused solely on myotonic dystrophy. Our mission is to enhance the quality of life of people living with myotonic dystrophy (DM) and accelerate research focused on treatments and a cure. Myotonic allocates its funding with 87 cents of every dollar donated going to fund research or provide resources to families living with DM.
What We Do
Support and Education
Myotonic provides emotional support, education and resources to affected individuals and their families, and conducts outreach to raise awareness about DM in the medical community and the general population.
Myotonic is committed to accelerating research and therapies. Efforts include: supporting up-and-coming postdoctoral fellowships to expand the research base; funding the development of new animal models, cell lines and a drug testing facility; launching and managing the Myotonic Dystrophy Family Registry; investing in target identification, drug screening, clinical trial design and outcome measures; and more.
Myotonic advocates for legislation, research, and infrastructure initiatives that advance our understanding of myotonic dystrophy, accelerate drug development, and improve diagnosis and care. We strive to raise visibility of myotonic dystrophy and people living with DM with key stakeholders in Congress, federal and state agencies, medical professionals, and the media.
Find more information about Myotonic's Impact and how your donations are spent.
Topgolf’s patented technology allows players to track their micro-chipped golf ball and accurately score each shot. Player’s shots are relayed back to their bay screen to show the accuracy and distance of each ball. Our giant targets make it fun for everyone! Players of all ages and skill levels can score! Topgolf is truly everyone's game. To learn more visit www.topgolf.com.
Thank you for all your support!
Brian & Megan Cronley