IS CHANGING LIVES
From partnerships, to ticket sales and donated auction items, people like you have helped Believing for Bryleigh Foundation (B4B) make an incredible impact on lives touched by Leukodystrophies throught the U.S. Check out what your support has allowed the Foundation to do to date.
Bryleigh continues to stay strong and healthy
Bryleigh and the Shullanberger family continued to be blessed by funds raised through the Believing for Bryleigh Foundation (B4B). While their goal is and always will be to help others with the B4B Foundation, they are accepting some financial help with the every day care of Bryleigh to include nursing care, specialized equipment & supplies needed monthly and the assistance with family errands. Bryleigh's Grandmother "T" was one of Bryleigh's primary caregivers, spending 3-4 days a week at the Shullanberger home helping Kaprice to manage the care Bryleigh needed while helping balance the needs of the entire family. When "T" unexpectedly passed away in February of 2016, the family began using B4B funds to provide additional support to help meet the needs of Bryleigh. It is because of the B4B supporters that they have been able to give Bryleigh everything she needs in the absence of "T". While no nurse could ever replace her sweet "T", it is comforting to have professional help available to the Shullanbergers that they can rely on and don't have to worry about the financial implications of hiring these types of care-givers.
Hunter'S hOPE & tHE bELIEVING FOR bRYLEIGH fOUNDATION pARTNER uP
The B4B Foundation has formed a major long-term partnership with Hunter's Hope, a 501(C)3 started and run by Jim Kelly, Hall of Fame quarter back for the Buffalo Bills, his wife Jill, and family. Jim's son, Hunter, suffered from a form of Luekodystrophy and passed away at the age of 9. Together, B4B and Hunter's Hope are working to create Luekodystrophy Care Networks (LCN) across the country at major children's hospitals . LCN's will bring uncompromising knowledgeable care close to those that need it and will support families in navigating the stormy waters of life with Luekodystrophy. To read more about Hunter's Hope, click here.
B4B's support of the mld foundation is helping families through a compassion fund.
The B4B Foundation continues to work with the MLD Foundation for the 3rd straight year offering not only general operating support but support for The MLD Family Compassion Fund™ a fund that supplies both emergency and significant event based support to families. The MLD Foundation is a 15 year old organization led by volunteers supporting the MLD community through annual conferences, connecting with families, influencing and driving research, and advocacy improving policy at the federal, state and local level for MLD and rare diseases. They recently launched a MLD newborn screening pilot study and are moving toward implementing MLD screening in all state NBS panels.
To read more about the MLD Foundation, click here.
Believing for Bryleigh foundation scholarship fund at children's hospital of pittsburgh.
The Children's Hospital of Pittsburgh (CHP) has a program dedicated to not only caring for patients with MLD but researching the disease as well. The B4B Foundation has continued to provide a scholarship fund that will help cover the costs of families with a child with MLD to fly to CHP and receive testing, care and support from their first class medical staff.