The 3rd boy to be diagnosed with ALD in 30 days of testing in New York State.
Newborn Screening for ALD in New York State started as of December 30, 2013
In just 30 days there have been 3 positive ALD boys and 1 girl with another disorder picked up by the test. Proof that newborn screening works!!
Thankfully for Baby Matthew and his family:
Add ALD to the Recommended Uniform Screening Panel (RUSP)
Please sign this new petition to have ALD added to the Recommended Newborn Screening Panel, the majority of states will NOT move forward without his happening. Thank you for your support. Together we can save the boys.
Hunter’s Hope Auction
Tune in tomorrow at 9:15 on WGR 550 Sports Radio in Buffalo, NY or on www.wgr550.com I’ll be helping our friends at Hunter’s Hope raise money for leukodystrophies by telling our story about Aidan and ALD.
Jim and Jill Kelly lost their son Hunter to Krabbe (another leukodystrophy) and have been such an inspiration to me with their work in research, newborn screening and helping families affected.
On January 16, HRSA’s Secretary Advisory Committee (SAC) unanimously voted in favor of moving ALD newborn screening forward to an external evidence review committee. Dr Jerry Raymond, Pediatric Neurologist at University of Minnesota Medical Center, Fairview, and Dr. Amber Salzman, President of The Stop ALD Foundation, spoke at the meeting’s public comment section. I supplied written comments about New York State and the fact that this will affect 235 babies each year in the United States. Over the next 2 years, the External Review Committee will review the disease, review the newborn screening test, understand what happens when a newborn would be identified to have ALD, and look at the therapies. A recommendation will then be made to the SAC whether ALD should be added to the Recommended Uniform Newborn Screening Panel (RUSP). The process to get ALD added to the RUSP started in September 2012 and the hope is that this will NOT take an additional 2 years to review.
We remain committed to ensuring that all newborns are screened for ALD so treatment can be applied early, saving countless children and families from suffering from a treatable disease that most often is diagnosed too late.
THANK YOU!! Dr. Richard Pan for introducing the Bill in California and holding a press conference yesterday to support ALD Newborn Screening, we still have a way to go, but this is great progress!!
Jeremy Hill Sr. for speaking about your story which is so close to my heart, your son Jeremy is a hero.
The Myelin Project for starting the process in California!!
All the families that have been affected by this horrible disease.
I have tears in my eyes as I opened a box of the new Cycle Source Magazine with Aidan’s Ride on the cover. I am so grateful to Chris Callen, Kristen Fowler, Amanda McAdams, Matthew Breeder Fowler, Amanda Lavery and everyone that has made Aidan’s Ride in West Virginia possible. With the money raised we were able to help ALD families in California, a family in Arizona, families in New York and Connecticutt and are working towards ALD Newborn Screening in Colorado, Tennessee, West Virginia, Florida, California and Texas. All of this couldn’t have been possible without Aidan’s Ride. All of you are amazing and with this continued support we will soon have a day where no family will have to deal with the horrific diagnosis of ALD when it is too late. Xoxoxo
Come join us for this amazing ride through West Virginia to raise money to support national newborn screening for ALD and to help families affected by the disease. I am amazed by the generosity of everyone involved in putting together this ride. We CAN save lives. A simple test that is readily available to us can help to monitor and treat boys born with ALD so they have the chance to go on and live a normal healthy life. Thank you all for your support!!
Clinical Trial for GENE THERAPY in Boston has begun
Some great news from Bluebird Bio who is responsible for starting the clinical trial on gene therapy for ALD. They are currently recruiting boys affected by ALD to undergo treatment. Very exciting as this was first successful in France with Dr. Auborg and we have finally brought this to the United States. Gene Therapy is thought to be a safer method as there is no anti-rejection medications used since they are using the patients own cells.
Please see the link for more information.
Only a few hours left! Thank you to each and every amazing artist who donated their time and to Biltwell Inc. for donating all of helmets.