Stop ALD Foundation

02/24/2025

Excited to now have my brother MJ on the team. As true Park City locals with years of experience and knowledge in property services/management we can assist you in finding the best home for your needs.

02/13/2023

Attention ALD Families: A Stanford Research Study on Vitamin D needs the input of parents or guardians of boys with ALD. This survey is essential to design a vitamin D study that is in line with the values and interests of ALD families. Survey:

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09/08/2021

https://discoveries.childrenshospital.org/first-gene-therapy-ald-recipient/?fbclid=IwAR10OI1qQ6Dqq0gjX_Go3h2KnJa9EFgckVAZja2JwfRGn5y7BKSS63mZH3o

Read about Matthew Elliott, the first patient in the world to receive gene therapy for adrenoleukodystrophy (ALD).

02/26/2021

https://bostonchildrens.zoom.us/webinar/register/WN_r6MF4-MiQy6sGmTngGLsAA

You’re invited to join us in celebrating the 10-year anniversary of the Boston Children's Hospital Gene Therapy Program. You’ll meet members of the Gene Therapy team, hear from some of our gene therapy recipients about their experiences and have an opportunity to ask questions. _________________...

02/25/2021

Learn more about next month's ALD Family Weekend March 19-21, 2021!

The ALD Family Weekend is a unique experience that allows families affected by adrenoleukodystrophy to connect in a fun environment - The Painted Turtle Camp. Parents, caregivers are encouraged to attend educational presentations by ALD specialists and physicians who are active in the research and t

01/23/2020

ALD Family Weekend is May 1-3 in Lake Hughes, CA at The painted turtle camp. Looking forward to connecting, learning and having fun with the community. ALD Family Weekend

12/21/2019

Important Stanford Medicine survey for caregivers of children with X-ALD to help better inform healthcare professionals. Plz complete by 28 Feb 2020.

10/08/2019

BE HEARD: Share your story with staff of the U.S. Food and Drug Administration about your experience of living with Childhood Cerebral Adrenoleukodystrophy (CCALD).
FDA’s Patient Affairs Staff (PAS and the National Organization for Rare Disorders, Inc. (NORD) are hosting a “Listening Session” for Childhood Cerebral Adrenoleukodystrophy (CCALD).

This session is a private, confidential conference call where a small, group of people affected by Childhood Cerebral Adrenoleukodystrophy (CCALD) can share first-hand with FDA staff their experiences of living with this rare disease. Participants are selected based upon diversity of gender,
geographic location, disease severity and other factors.
Our organization is involved with the hope to provide information from the patient perspective that
will help FDA staff members better understand the burden of living with this disease, the needs and concerns of patients.
There are a limited number of openings for participating in the session, if you are interested in participating on this call, please let us know by September 30 by filling out this brief survey:

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09/07/2019

Great news for babies born in with . Now all will be screened at birth so if they have this genetic disease, the family knows so monitoring and interventions can take place to save their life. Great work Eve Salzman Lapin Bobby Lapin!

The rare genetic disorder occurs primarily in males and affects the nervous system, as well as the adrenal glands.

08/26/2019

Wonderful video featuring Maria Kefalas, the founder of The Calliope Joy Foundation, and her amazing drive to help kids with

Maria Kefalas founded the Calliope Joy Foundation and sold 45,000 cupcakes to start a clinical research center for her daughter's Cal's disease, called leuko...