Dylan was born on April 15, 2009, Daddy’s Little tax Deduction! For the first 5 months he progressed like a normal child, until one day, which seemed like a case of collie, he was taken into Children’s Hospital of Pittsburgh, by his new, first time mom. The visit proved to be anything than routine. After […]
Dylan Joseph Changle, Krabbe Disease Read More »
From PatientWorthy.com After coming back from the Global Genes conference, Kristie was convinced that establishing a foundation was the right next step to advocate for a cure for Refsum Disease. With the help of other patients and family, Global DARE Foundation was formed with 5 board members. DARE stands for Defeat Adult Refsum Everywhere. The first board
Kristie DeMarco, Refsum Disease Read More »
from BlueCross BlueShield of Illinois Look around and you’ll see caregivers. In the U.S., 1 in 3 adults give care to others. Caregivers may be taking care of elderly parents, a sick spouse or a disabled child. Being a caregiver can be very stressful and demanding. It can even lead to caregiver burnout, a feeling
Taking Care of Yourself When Taking Care of Others Read More »
The ULF received donations in memorial or honorarium for the following during the month of April 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Ryan D. Miller: Ellen Dodaro Daxton Wallace: Sandy Wallace IN MEMORY OF Joseph Abelman:
In Memorial or Honorarium – April 2020 Read More »
Minoryx Therapeutics is recruiting for a clinical trial focusing on cALD in Europe. The NEXUS clinical trial is a phase 2, open-label clinical study designed to assess the efficacy and safety of leriglitazone in male pediatric patients with early stage cerebral X-linked adrenoleukodystrophy (cALD). The NEXUS study recruits cALD patients with early cerebral MRI lesions.
Minoryx Nexus Clinical Study for cALD Read More »
