Global non-profit rakes in over USD100,000 for NF2 gene therapy research on Giving Tuesday
THE non-profit NF2 BioSolutions (NBS) has received over USD100,000 in donations through a global donation drive in the run-up to Facebook’s Giving Tuesday, paving the way for research into a gene therapy treatment that will greatly benefit those fighting a rare genetic disorder called Neurofibromatosis Type 2 (NF2).
Speaking of several campaigns which saw over USD 100,000 raised, NBS Vice-President Gilles Atlan said that the donation drive was successfully because people could relate to the struggle faced by people fighting NF2 and their loved ones.
“I think our donation post went viral especially because we shared the raw reality of four of our kids – seven-year-old AJ, nine-year-old Jessica, 11-year-old Laurel and my 11-year-old daughter Karen. We shared how many brain tumors they currently have had and the number of surgeries they have overcome,” said Gilles Atlan. He said that he thinks this created empathy and spurred a drive to save these kids. “We also set up a global ambassador network two weeks prior to the campaign, harnessing a network of people motivated to get rid of this horrible genetic mutation. Throughout the campaign, we ignited our ambassadors and the post spread worldwide,” added Gilles Atlan.
Meanwhile, NBS President and CEO Nicole Henwood, MD,. said that she was overwhelmed by the support received by the non-profit throughout the campaign.
“I am overwhelmed with the response of our families, friends, neighbours and those who supported us without even knowing us. Being affected by a rare disease is very isolating, the showing of love and support warmed our hearts and made us realise we are not alone in this fight to save our children,” she said.
The funds obtained through the campaign will ultimately fund research into a gene therapy that addresses schwannomas, which are benign tumors composed of Schwann-lineage cells that normally form a protective sheath around cranial nerves in the skull and peripheral nervous system.
Many people with schwannoma-associated disease have multiple tumors which generally first appear during adolescence and continue to develop throughout life. These tumors cause pain, sensory/motor dysfunction, facial paralysis, deafness and death through compression of peripheral nerves, the spinal cord, and/or the brain stem.
Schwannomas are associated with three distinct disease entities – sporadic schwannoma, neurofibromatosis type 2 (NF2), and schwannomatosis. Sporadic vestibular schwannomas are diagnosed in over 6000 individuals per year in the US alone (19 tumors/1,000,000 individuals per year). NF2 and Schwannomatosis have incidences of 1/25,000 and 1/40,000 births, with estimated point prevalence’s (people currently living with the disorder) of 13,000 and 8,000 respectively in the US.