On Tuesday, Rare Genomics Institute (RG), announced that it is launching ten separate crowdfunding campaigns to help patients with rare diseases pinpoint the causes of their illnesses. All amounts raised will go towards exome sequencing, which is a method of partial genome sequencing to find the genetic causes of diseases.
This effort is part of Amplify Hope, initiated by RG to determine the most effective crowdfunding programs and measure their effect on scientific education. Amplify Hope is a new RG study funded by the John Templeton Foundation that provides crowdfunding training to rare disease families and tracks the overall reach and scientific impact to help rare disease patients.
Jimmy Lin, MD, PhD, MHS, President of the Rare Genomics Institute, stated:
“Rare Genomics Institute has helped hundreds of families with rare diseases. This project encourages the community to join our continuous efforts to help the families who have literally exhausted all other options. By donating and spreading the word about these campaigns, we’ll be able to fund the exome sequencing to uncover the exact cause of their illness.”
Some examples of the campaigns launching today include a beautiful 5 year old girl, Ria, with an extremely rare and yet still undiagnosed condition that has caused her to have overall developmental delays. Her parents hope the sequencing will find answers to help Ria. Her father, Rod Booker, shared:
“At five years old, Ria has yet to take her first step, has yet to say her first words or call for Mommy or Daddy. Ria has severe hypotonia and cannot control her arms and leg movements. She cannot eat solid food and cannot grasp toys to play with them as a typical 5 year old.”
Rare Genomics is inviting patients, families, friends, industry partners and everyone to support the Amplify Hope Initiative. Please join us in these campaigns featured on CrowdRise, Indiegogo Life and YouCaring. All money raised above the goal amounts will go to help undiagnosed rare disease children get exome sequencing.
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