A Premier Hospitality and Fundraising Event
Thursday, September 2, 2021
Bolingbrook Golf Club
Happy New Year!
Sponsorship renewal opportunities are now available.

Please contact Terri Nielsen for renewals.
Key 2021 event dates to remember:

Wednesday, March 31, 2021
  • Sponsorship and Participation Renewal Commitments Due 


Thursday, April 1, 2021
  • Sponsorship and Participation Registration is Open


Monday, August 2, 2021
  • First Day for Event Day Participant Sign-ups Individual Golfer and Non-Golfer Participants


Tuesday, August 31, 2021
  • All Event Commitments Due Partnership, Sponsorship, Golf & Non-Golf Participation

  • All Charitable Donations are due to MDA

  • Last Day for Sign-ups Golfers & Non-Golfer Participation to Guarantee Catering Counts and Correct Shirt Size Availability
2020 Highlights

RESEARCH

  • In 2020, we awarded 15 new MDA grants totaling more than $4 million for a range of neuromuscular disease research designed to help better understand and address disease mechanisms, build on existing gene therapies and other treatments, advance drug target identification and stop disease progression. We also awarded over $1.6 million for Amyotrophic Lateral Sclerosis (ALS) research. This round of grant funding reinforces our unwavering commitment to advancing research and builds on the more than $1 billion we have already invested to uncover new treatments and cures. In addition, we launched the neuroMuscular ObserVational Research (MOVR) Visualization and Reporting Platform (VRP), which represents a monumental leap in advancing neuromuscular disease research and improving patient care, with partner DNA Nexus.

  • Dec. 2020 – MDA officially nominated Limb-Girdle Muscular Dystrophy for ICD-10 diagnostic codes. If accepted, these codes could accelerate research, drug development, treatment access, and more for the LGMD community.

  • FDA Drug Approvals:
  • Aug. 2020 – MDA celebrated FDA approval of Vitolarsen for treatment of Duchenne Muscular Dystrophy (DMD) amenable to Exon 53 Skipping. It is the third exon-skipping, disease-modifying drug to treat DMD, the most common form of muscular dystrophy.

  • Aug. 2020 – MDA celebrated FDA approval of Risdiplan for treatment of Spinal Muscular Atrophy (SMA) in pediatric and adult patients. This is the third disease-modifying therapy approved to treat SMA, the leading genetic cause of infant death. It is designed to target the genetic root cause of SMA by increasing production of the missing functional survival motor neuron protein.

CLINIC and CARE

  • We worked to ensure that MDA’s highly vulnerable patient/family communities were not left on the sidelines, transitioning to a telehealth model in our 150 Care Centers. We enhanced the MDA Resource Center and expanded our community education and information efforts with additional webinars and virtual gatherings.


CAMP & YOUTH PROGRAMS

  • We worked quickly to convert to a virtual camp model. This model allowed our highly vulnerable population to participate and also opens an opportunity in the future to reach more kids through virtual offerings.

  • We also established MDA Let’s Play, a unique space where our community could create and maintain strong interpersonal connections without leaving home.

ADVOCACY

  • We have led efforts to ensure the MDA community is prioritized for access to the COVID-19 Vaccines and advocated for their prioritization in the CARES ACT.

  • Dec. 2020 - Newly passed ALS Disability Insurance Access Act. The legislation would eliminate the five-month waiting period for SSDI benefits for people living with ALS so that they can begin receiving these benefits immediately. More details about this legislation are available on our Advocacy page here.

THERE'S MORE...

  • March 15 – 18, 2021 - MDA Clinical & Scientific Conference will be 100% virtual with live-broadcasted sessions, on-demand videos, virtual networking sessions, exhibits, and poster mdaconference.org