CHICAGO (PRWEB)
February 15, 2022

Harmony 4 Hope, a non-profit organization merging music and storytelling to provide funding for the research of rare diseases, is teaming up with Grammy Award winner and NYT Best Selling Author Peter Frampton to raise awareness for rare disease.

Together with the Genomic Sciences and Precision Medicine Center at the Medical College of Wisconsin, Children’s Hospital of Wisconsin, Johns Hopkins Medicine, and sponsor Horizon Therapeutics, Harmony 4 Hope is proud to welcome Peter Frampton as a guest at their upcoming Rare Storytellers event as he shares his story of living with Inclusion Body Myositis and his diagnostic journey.

“We could not be more pleased to welcome Peter Frampton as a Rare Storyteller,” said Kerry Hughes, Executive Director of Harmony 4 Hope. “Rare Storytellers is a rapidly growing network of patients, musicians and medical professionals currently representing over 30 rare diseases. Adding a strong voice like Peter Frampton’s shows just how impactful these diseases are, and how critical the research being done to cure them is.”

Peter Frampton, one of the most celebrated artists in rock history, was diagnosed with Inclusion Body Myositis (IBM), a rare autoimmune disease, in 2015. Following his diagnosis, Frampton partnered with Johns Hopkins, the facility where he is currently being treated, to create The Peter Frampton Myositis Research Fund at Johns Hopkins. The Fund is dedicated to improving the lives of more than 24,000 patients currently living with IBM and to, ultimately, find a cure.

“Inclusion Body Myositis and other rare diseases affect more than 350 million people globally, yet we still know so little about many of these diseases,” said Grammy Award winning artist Peter Frampton. “Where there is education, there is a greater chance for funding and advancing research.”

Held annually on the last day of February, World Rare Disease Day offers people across the globe a chance to come together to celebrate and recognize the over 7,000 Rare Diseases that collectively impact over 350,000,000 around the world. Rare Storytellers, a division of Harmony 4 Hope created for the purpose of educating on Rare Diseases through songs, stories and science, is taking measures to ensure this year’s celebration is extra special.

In addition to a featured discussion between Kerry Hughes and Peter Frampton, this year’s event will feature Dr. Lisa Christopher-Stine, associate professor at John Hopkins School of Medicine and Peter Frampton’s physician, to share more about IBM and its impact on those affected by the disease.

The musical performance for this event will be given by H4H Musical Ambassador, Peter Dankelson. Peter was diagnosed with Goldenhar Syndrome, also known as Oculo-Auriculo-Vertebral Syndrome (OAVS) at a young age. Peter is a musician and motivational speaker for Pete’s Diary and just published his autobiography, How I Learned to Rock My Life in January 2022.

This year’s event “Rare Storytellers: Meet Peter Frampton” will be hosted on March 15, 2022 at 2:00 p.m. CT. Registration for the event is open and available to the public here.

For more information on Harmony 4 Hope, Rare Storytellers, or how you can get involved in this year’s celebration of World Rare Disease Day, please visit http://www.harmony4hope.org or contact Kerry Hughes at kerry.hughes@harmony4hope.org.

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Harmony 4 Hope

Harmony 4 Hope (H4H) is a non-profit organization merging music and storytelling to provide funding for research, increase awareness of rare diseases, uplift patients and families through music and ultimately improve the lives of the 350 million individuals worldwide collectively impacted by more than 7,000 rare diseases. Through music centered fundraisers and corporate sponsored Rare Storytellers, H4H provides grants to external research entities annually. Learn more at http://www.harmony4hope.org.

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