The Future Is Now

We have accomplished much together since the Society’s inception in the early 90s. In recent years, we’ve taken great strides toward a hopeful future – all of which have been made possible through the continued invaluable involvement and investment of our supporters and the FSHD community at large.

With the continued involvement and investment of our dedicated FSHD community:

- - We have launched programs to address critical gaps in clinical readiness;
  - Enhanced engagement and empowerment for families living with FSHD;
  - Expanded our team; and
  - Elevated regulatory and reimbursement advocacy.

Explore the links below to learn more about our key initiatives and how your support is helping the future unfold today.

Initiative & Updates

Key in 2024, these initiatives were designed to help keep our FSHD community informed and empowered. Visit each page to learn more about how they can support you in the year to come.

FSHD Society's Clinical & Scientific Team Expands

Meet Drs. Michelle Mellion & Lucienne Ronco

As we enhance our focus on ensuring treatments succeed and are accessible to families, we also cultivate the knowledge and talent on our team. Together, Drs. Ronco and Mellion bring outstanding expertise in FSHD drug development, FSHD clinical trials, and practical delivery of neuromuscular treatments and care.

Michelle Mellion, MD

Chief Medical Officer

Michelle Mellion, MD, Dr. transitioned from academia to clinical development at Biogen where she worked on the remyelination program and contributed to the development of novel biomarkers. She then co-led the pain program at Vertex Pharmaceuticals and then went on to lead the development of a novel therapy for FSHD.

Click for Dr. Mellion's Full Bio

Michelle Mellion, MD, graduated from Colgate University with honors in molecular biology and Wake Forest University Medical School. She went on to complete her internship in medicine, residency in neurology and fellowship in clinical neurophysiology at Brown. Dr. Mellion was part of the neurology faculty at the Warren Alpert Medical School/Brown University for over a decade. At Brown, she conducted her own grant funded research on various neuropathies, served as director of the clinical neurophysiology fellowship, neurology residency program and was an attending physician at the MDA neuromuscular clinic as well as at her own private general neurology clinic. She also headed up clinical research supporting the development of a novel therapy for myasthenia gravis.

Dr. Mellion transitioned from academia to clinical development at Biogen where she worked on the remyelination program and contributed to the development of novel biomarkers. She then co-led the pain program at Vertex Pharmaceuticals and then went on to lead the development of a novel therapy for facioscapulohumeral muscular dystrophy (FSHD). Currently, Dr. Mellion is a senior vice president and head of clinical development at PepGen where she is leading the development of enhanced delivery oligonucleotide therapeutics for the treatment of rare neuromuscular diseases. Even after her transition to industry, Dr. Mellion continued to serve the neuromuscular community as an attending in the MDA clinic at Brown and then transitioned to the pediatric neurology clinic affiliated with Tufts University. She continues to make significant contributions to FSHD through her work with the FSHD Society. Her academic research and work in industry has resulted in numerous original publications in top tier journals.

Lucienne Ronco, PhD

Chief Science Officer

Dr. Ronco has extensive experience in translational science, clinical trial design, drug discovery, and pharmaceuticals. While at Fulcrum Therapeutics, Ronco participated in FSHD molecular and imaging characterization. She discovered and developed methods to assess how well new therapeutics work in human clinical trials of FSHD.

Click for Dr. Ronco's Full Bio

Lucienne received her undergraduate degree from Tufts University. She earned a Ph.D. in Biological Chemistry from UCLA and returned to live in Boston for Post-Doctoral training at Harvard Medical School. She worked in both pharma and biotech as she advanced to become a Vice President and a global scientific leader of basic research and clinical trial design.

While at Fulcrum Therapeutics, Lucienne participated in FSHD molecular and imaging characterization as she discovered, designed, and developed methods to assess how well new therapeutics work in human clinical trials of FSHD. At the Broad Institute she oversaw the development of rare kidney disease small molecule therapeutics and biomarkers and previously she worked at Astra Zeneca for a decade on oncology drug development.

Lucienne is a member of her town government in Wellesley, MA. She volunteered teaching STEM to students in 7-12 grades in Boston schools. She and her family - Nick Rhind, her husband, and son, Anthony - love to hike the White Mountains in NH. She grew up in the Pocono Mountains of Pennsylvania and returns there often to see family.