2019 HNF Donations

Won’t You Please Consider A Year End Gift?

by | Dec 23, 2019 | 0 comments

We Put Your Donations to Work in 2019!

1) HNF developed a new program called Movement is Medicine™, launching an annual Summit that supports patients through exercise therapies

2) Hosted the first Pediatric Neuromuscular CMT Expert Roundtable to advance care and target therapies for our CMT kids

3) Advanced pediatric therapies by funding (with a generous match from U Penn) a clinical study: Correlation between gait abnormalities, activity monitoring parameters, CMTPed Score and a biomarker in children with CMT

4) Developed 15 new Patient Focused Educational CMT-Connect Webinars

5) Added additional CMT types to the HNF Therapeutic Research In Accelerated Discovery (TRIAD) Gene Therapy Program 

6) Developed 2 Patient-Reported Outcomes (PROs) Studies through the Global Registry for Inherited Neuropathies (GRIN) to advance CMT therapies as well as presented important findings at major medical conferences across the globe

8) Hosted the “Take a Look at This Heart” documentary screening in New York City to shed light on disability and intimacy

9) Added 3 additional HNF Centers of Excellence; we now have 17 designated sites in total to support patient care, research and clinical trials 

10) Increased awareness through CME Educational Courses to assess and advance knowledge of CMT amongst medical professionals 

11) Vetted and added over 450 more health care providers to HNFs Health Care Provider Directory to provide care to our patient community 

12) Held multiple TEAM CMT events – providing more opportunities than ever for donor engagement through Movement is Medicine™ fundraisers: TCS NYC Marathon, TD Five Boro Bike Tour/Bike New York, Philadelphia Million Dollar Bike Ride, and Coast to Coast Spin-a-Thons

13) Expanded our Therapeutic Research In Accelerated Discovery (TRIAD) program – HNF approved the development of additional cellular assays, animal models and clinical studies to tackle research gaps and advance therapies

14) Grew our thriving CMT Inspire Community with increased peer-to-peer support – we are now close to 7000 members strong

15) Continued to engage in FDA regulatory issues to address drug  development for CMT. HNF’s FDA Clinical Path Innovation Meeting (CPIM) provided a case study on innovative voice technology to incorporate Patient Reported Outcomes (PROs) for clinical trials and studies

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