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 this past year.
2021-2022 grant recipients
JALEN & KYLAR WATERMAN - $2,500
Continued medical care, they are both affected with ALD
SOFIA ANGIULIi- $10,000
Construction for an accessible bathroom
NAOMI HINDMAN-$10,000
Handicapped accessible van
ALICE CARTER- $5,000
Accessible bike/stroller
HOPE HOSPICE - $2,500
CHRISTMAS BLESSINGS FOR AFFECTED FAMILIES
B4B spent $30,000 this past Christmas sending various gifts to families around the country that care for a child with a Leukodystrophy.
MORGAN'S WONDERLAND-$5000
2019-2020 grant recipients
OWEN WEBB
$5,000 for a therapy dog
BLAINE SCHEIDER
$5,000 to assist with the purchase of an accessible vehicle
GIOVANNI & SALVATORE SERENO
$7,000 to assist with the paying of critical medication and past medical bills for the Sereno boys, Giovanni and Salvatore who both have Metochromatic Leukodystrophy (MLD)
TEAGAN DONNELLY
$5,000 to assist with paying rent and medical bills.
KORBIN WOOTON
$3,000 to pay for travel for a clinical drug study
AVERIE WITGEN
$5,000 to assist in the purchase of a wheel chair accessible van
CHRISTMAS BLESSINGS FOR AFFECTED FAMILIES
B4B spent $15,000 this past Christmas sending various gifts to families around the country that care for a child with a Leukodystrophy.
HOPE HOSPICE NEW BRAUNFELS
$2,500 to support their annual fundraising gala
JAMES LUCZAK
$2,500 to support dental work for James. His teeth were affected by late onset MLD.
big news with b4b
Greg Abbott, the Texas Governor declared September 2022 Leukodystrophy Awareness Month
We began the process to add MLD and/or Krabbe to the Texas newborn screening panel in Spring 2023
We started the conversation with a medical team to launch an LCN Center in San Antonio in the very near future.
annual grant recepeints
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. B4B has donated $325,000 to date.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 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. B4B has donated more than $35,000 to date.
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.