Rare Genomics Institute (RG) 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 cutting-edge 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.
“Rare Genomics Institute has helped hundreds of families with rare diseases,” said Jimmy Lin, MD, PhD, MHS, President of the Rare Genomics Institute. “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 with an extremely rare and yet still undiagnosed condition that has caused her to have overall developmental delays.
“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,” said her father, Rod Booker. “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.” Her parents hope exome sequencing will find answers to help Ria.”
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.
Rare Genomics’ crowdfunding partners on this project include three leading industry pioneers: CrowdRise, Indiegogo Life and YouCaring. Our partners also include two life sciences technology leaders: Ambry Genetics and Baylor Miraca Genetics Laboratories.
For more information about the Amplify Hope, please visit http://amplifyhope.raregenomics.org/
