In Memorial or Honorarium – November 2020
The ULF received donations in memorial or honorarium for the following during the month of November 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Alex Bouley Bernard Levine, M.D. Aryabella HaegerShannon Wright Daxton…
In Memorial or Honorarium – October 2020
The ULF received donations in memorial or honorarium for the following during the month of October 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF C. Michael Jaynes: Angela Pontius, C. Michael Jaynes –…
In Memorial or Honorarium – September 2020
The ULF received donations in memorial or honorarium for the following during the month of September 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Ella McKee: Heather McKee – For our brave daughter…
In Memorial or Honorarium – August 2020
The ULF received donations in memorial or honorarium for the following during the month of August 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Amie Matlon: Marianne Matlon Aveline Brendel: Pauline Naudin, William…
In Memorial or Honorarium – July 2020
The ULF received donations in memorial or honorarium for the following during the month of July 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF David Stocki: Melissa Scier – For my son who…
In Memorial or Honorarium – June 2020
The ULF received donations in memorial or honorarium for the following during the month of June 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Angelica Gallegos: Rozzana Vasquez Cobos Anna Walentowski: Anonymous Briana…
Newborn Screening Saves Lives Reauthorization
Thank you ALL for supporting last year’s sign on letter to add language to Newborn Screening Saves Lives Reauthorization which would fund states in order for every state to become RUSP compliant. As we know Newborn Screening Saves Lives Reauthorization is still undergoing challenges with pushback from Senator Rand Paul…
Research Study: Impact of COVID-19 on People Living with Rare Diseases and Their Families
The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. We want to learn from you and hope that you are willing to share your experience. The Rare Diseases Clinical Research Network’s (RDCRN) Data Management and…
Patient Focused Drug Development Meeting on Krabbe Disease
NORD invites you to register for an externally-led Patient-Focused Drug Development (EL- PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30 – 4:30 pm ET. Patients and caregivers impacted by Krabbe disease who are interested in potentially speaking at the meeting as panelists should be sure to fill out…
In Memorial or Honorarium – May 2020
The ULF received donations in memorial or honorarium for the following during the month of May 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Jacob: Nancy Reiners Jackson Jordan AJ Buckingham: Mr. &…
Dylan Joseph Changle, Krabbe Disease
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…
Kristie DeMarco, Refsum Disease
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…
Taking Care of Yourself When Taking Care of Others
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…
In Memorial or Honorarium – April 2020
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 [email protected] or by calling 815.748.3211. IN HONOR OF Ryan D. Miller: Ellen Dodaro Daxton Wallace: Sandy Wallace…
Minoryx Nexus Clinical Study for cALD
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…
#GivingTuesdayNow is May 5, 2020
Join the Global Day of Giving and Unity! #GivingTuesdayNow is set to take place on May 5, 2020 as an emergency response to the unprecedented need caused by COVID-19. The day is designed to drive an influx of generosity, citizen engagement, business and philanthropy activation, and support for communities and…
Sam Buck, VWM
“Until February 2013, our 2-year-old son Sam was completely normal child, no problems with his pregnancy or birth, he met every milestone, and overall was healthy. He would trip and fall a lot, but we never thought anything of it. Then on February 23, 2013, Sam was playing on our…
Addy Moss, 4H Syndrome
by Jen Moss, originally posted here: Mountain Parent Our story pivots around one precise moment. A phone call one afternoon in May 2016 almost four years ago. Every life event before and every moment since is redefined now in relation to the information we received that afternoon. The rest of…
Life During the Covid-19 Crisis: A Chat with Dr. Bernard
by The Montreal Children’s Hospital Foundation Dr. Geneviève Bernard is a world-renowned expert on genetically determined white matter disorders, called leukodystrophies. Patients are referred to her clinic from all over the world. She brings much comfort to families everywhere who are suffering from these diseases for which the vast majority…
In Memorial or Honorarium – March 2020
The ULF received donations in memorial or honorarium for the following during the month of March 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Jarod Barndollar: Roger & Donna Barndollar Megan Early: Chris…
A Message about Safety and COVID-19
March 2020 Dear ULF Community, On behalf of the Board of Directors, Medical and Scientific Advisory Board, and the staff of the ULF, please know that we are following the developments of COVID-19 and feel the concerns of our community. At this time, all we can offer is advice on…
A Letter from the ULF President
Dear Friends and Supporters of the United Leukodystrophy Foundation, As the President of the ULF I am excited to talk to you about the many changes that are taking place as we build the future of the Foundation. In the past year, we’ve added seven new members to our board…
In Memorial or Honorarium – February 2020
The ULF received donations in memorial or honorarium for the following during the month of February 2020. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at [email protected] or by calling 815.748.3211. IN HONOR OF Shayla Arrotta: Taytum Arrotta The Brazeal Family: Patrick & Pamela Mumey …
Henry Crawley, PMLD
by David Crawley My son Henry is our first born, next to his beautiful and helpful 4 year old sister Rosemary. Henry is 5 years old (about to be 6) and he’s a happy, thoughtful, wonderful, kind, and loving little boy. He is very curious, imaginative, and funny. Every day…
Andy Fingeroot, Canavan
by Alan Fingeroot Our son Andy died of Canavan disease when he was 15 years old. This is our story. No parent should have to endure the heartache of a child affected with a Jewish genetic disease. These diseases are preventable if you know your carrier status before you get…