Thanks to the generosity of the Shahnaz Kraybill family and their family and friends, (Aliya, affected with ichthyosis, her sister, Diya, and their parents Durreen and Robert), FIRST has established the Diya & Aliya's Friends (DAF) Fund to help alleviate some of the financial burden that may be facing families with affected children.
FIRST recognizes that our members may sometimes have a tough time navigating through the emotional, psychological, and the logistical pressures of life associated with being affected with ichthyosis. Maybe financial stress can add to that stress making things feel almost impossible. How do you purchase your medical needs if prices seem to continuously increase, especially if you are barely making it now? FIRST IS OFFERING HELP.
A financial aid fund is available for families to apply for financial assistance to attend the FIRST National Conferences. The National Conference Financial Aid Fund, will provide funds for registration and accommodations. Funding is limited; all applications will be evaluated based on scholarship guidelines.
The UFIRST SCHOLARS Program was established in 2010 by a seed gift from Valerie & David Scholl. The Scholls are grandparents to an affected granddaughter who wanted to provide an opportunity for affected students to advance their post-secondary education in partnership with FIRST. Their inspiration is to provide the opportunity for students affected with a form of ichthyosis or related skin type to achieve their highest educational potential. Other donors are encouraged to contribute to the fund to help grow its capacity.
Terry and Robert Melton have created The Weary Fund through a generous contribution in honor of Terry’s parents, Dr. Peyton and Janet Weary, and their strong commitment to FIRST.
Financial Aid for Rare Disease
Information about financial aid for rare diseases is available on the NIH website via this link.