Progeria Research Foundation

The Progeria Research Foundation Selected as an Official Charity Partner in 2024 Boston Marathon

Retrieved on: 
Tuesday, March 26, 2024
Research, Friends, Disease, Emmy Awards, Memory, Partnership, TED, Boston Athletic Association, PRF, Bank, Attitude, Progeria Research Foundation, Athlete, Boston Marathon, Thought, DRS, HBO, FDA, TED (conference), Parent, Boston, Boylston Street

PEABODY, Mass., March 26, 2024 /PRNewswire/ -- The Progeria Research Foundation (PRF), the only nonprofit solely dedicated to finding treatments and the cure for Progeria, celebrates its first year as an Official Charity Partner of the Boston Athletic Association's 128th Bank of America Boston Marathon®. Represented by a team of 10 passionate runners, this partnership will bring vital funds for Progeria research endeavors, while casting a light on this ultra-rare disease and PRF's progress toward the cure.

Key Points: 
  • PRF's 10 Marathon Runners Raise Funds to cure Progeria, all connected to Sam Berns
    PEABODY, Mass., March 26, 2024 /PRNewswire/ -- The Progeria Research Foundation (PRF), the only nonprofit solely dedicated to finding treatments and the cure for Progeria, celebrates its first year as an Official Charity Partner of the Boston Athletic Association's 128th Bank of America Boston Marathon®.
  • Without treatment, children with Progeria die of heart disease at an average age of 14.5 years old.
  • "From Foxboro neighbors, to middle school classmates, to athletes who got to know Sam at PRF's annual 5K Race for Research – it's heartwarming to know they're now representing The Progeria Research Foundation at the Boston Marathon, in Sam's honor."
  • "This is a tremendous honor to be invited to join the Bank of America's Official Charity Program in the 2024 Boston Marathon," said Audrey Gordon, President and Executive Director of The Progeria Research Foundation.

Ahead of Disability Pride Month, New Children's Book and Digital Platform "Joyfully Josie" Aims to Spark Conversations Around Disabilities, Rare Diseases, and Inclusion

Retrieved on: 
Wednesday, June 7, 2023
Parent, Learning, Fear, FOXG1, Rare, Progeria Research Foundation, Research, Child, DSM-IV codes, Residential care, Toy, Amazon

Designed to help parents and families discuss inclusion in the context of disabilities, this captivating children's book series aims to foster understanding of rare diseases and the experiences of medically complex individuals.

Key Points: 
  • Designed to help parents and families discuss inclusion in the context of disabilities, this captivating children's book series aims to foster understanding of rare diseases and the experiences of medically complex individuals.
  • Through the power of storytelling, she enlightens both parents and children, helping them feel comfortable with those who are different.
  • "My goal is to help give parents the tools to introduce disabilities and inclusion to their children at a young age.
  • "Joyfully Josie" extends beyond the pages of the book with an innovative interactive digital platform .

Proceeds from Priority Review Voucher Sale Will Fund Search for Cure for the Rapid Aging Disease Progeria

Retrieved on: 
Monday, November 23, 2020
Progeria Research Foundation, Senescence, Progeria, Sam Berns, PRF, Farnesyltransferase inhibitor, Farnesyltransferase, Berns, FTI, Priority review, Clinical medicine, Health

PEABODY,Mass., Nov. 23, 2020 /PRNewswire/ --The Progeria Research Foundation (PRF) today announced that it will receive half of the net proceeds of the sale of a Priority Review Voucher (PRV).

Key Points: 
  • PEABODY,Mass., Nov. 23, 2020 /PRNewswire/ --The Progeria Research Foundation (PRF) today announced that it will receive half of the net proceeds of the sale of a Priority Review Voucher (PRV).
  • Zokinvy is a farnesyltransferase inhibitor (FTI) that has shown survival benefit in children with Progeria.
  • The Progeria Research Foundation (PRF) was established in 1999 by the family of Sam Berns, a child with Progeria.
  • PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria and its aging-related conditions, including heart disease.

GLOBALHealthPR Co-Founder and Chair, John J. Seng, Receives Award from Progeria Research Foundation

Retrieved on: 
Monday, April 30, 2018
Progeria Research Foundation, Genodermatoses, Progeroid syndromes, Rare diseases, Progeria, PRF, Medicine, Demography

Seng is the founder of GLOBALHealthPR, as well as Spectrum Science Communications, a leading health and science public relations agency in the United States.

Key Points: 
  • Seng is the founder of GLOBALHealthPR, as well as Spectrum Science Communications, a leading health and science public relations agency in the United States.
  • "John has been an amazing friend to PRF, Sam and all children with Progeria worldwide," said Leslie Gordon, Co-Founder and Medical Director of The Progeria Research Foundation.
  • "For the past 15 years, John has been instrumental in advancing PRF's mission to discover treatments and the cure for Progeria.
  • "On behalf of my colleagues at Spectrum and GLOBALHealthPR worldwide, I'm incredibly humbled to accept this award and to have had the opportunity to help make a difference in Progeria research," said Seng.