What is ALD?
Adrenoleukodystrophy (ALD) is a rare, genetic disease that affects approximately 1 in 17,000 people worldwide. It knows no racial, ethnic, or geographic barriers. It is an X-linked disease which means it most severely affects boys and men, but women are also often affected. It is caused by a genetic mutation in the ABCD1 gene, which affects the body’s ability to create the protein that helps the process of breaking down very long–chain fatty acids (VLCFAs). The VLCFAs build up in the brain, nervous system, and adrenal gland and eventually destroy the myelin sheath that surrounds and protects the nerves in the spinal cord and the brain. While there are treatment options for ALD, there is no cure for the disease.
What is ALD Makes Me Blue?
ALD Makes Me Blue is a collaborative fundraising coalition among international ALD organizations. It is the “Brain Child” of a mom who set out to make a difference in the ALD community after the late onset diagnosis of her 8 year old son, Sawyer, who succumbed to the disease 6 months later. As the founder of Fight ALD – Fighting Illness Through Education, Janis Sherwood has worked tirelessly for 19 years to try and ensure no other child or family would have to experience the devastating effects of ALD.
As a way to pass the torch to the community before retiring, she realized there was a lot of potential to still spread awareness, raise money for these ALD organizations and perhaps have a little fun while doing so. Thus, the idea for “ALD Makes Me Blue” was born. In lieu of donations to Fight ALD, Janis would appreciate her supporters making donations to ALD Connect instead.
The color blue has historically been associated with leukodystrophy awareness month and so it is only fitting that the fundraiser is centered around this color. The ALD Makes Me Blue fundraiser will begin on February 1, 2023, which is the start of Rare Disease Month. We want to see how ALD makes you “blue”.
Donations to any of our patient organizations are much appreciated. Please reach out to firstname.lastname@example.org or DM us on social media with questions.
How do I participate?
- GO BLUE! Check out our scorecard on the ALD Makes Me Blue Challenge page and pick a way to raise awareness. Don’t be shy!
- Donate to an ALD non-profit organization
- Challenge your family, friends, and network to do the same. There is strength in numbers, especially for rare diseases. Tag your favorite celebrity and see who you can get to join in on the fun!
- Use #aldmakesmeblue throughout the month of February!
Are you ready to help spread the word and show us how ALD Makes you blue?!
Meet Our ALD Non-Profits
The ALD Alliance (formerly Aidan Jack Seeger Foundation) helps families across the United States that are newly diagnosed with adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease. This fight begins by making sure every baby born in the United States is tested at birth for ALD. The foundation was established to address the need for information and newborn screening with respect to adrenoleukodystrophy. In addition, we strive to support and encourage those afflicted as they and their families struggle to endure, adjust and cope with the demands of the disease. We continue to:
- Advocate for ALD newborn screening in every state
- Gather and provide current, functional information and provide financial support to families of children with ALD
- Fund research efforts that will identify new treatments, therapies and ultimately, a cure for ALD
- Raise awareness of ALD to increase the probability of early detection and treatment
ALD Connect’s mission is to improve health outcomes for patients with adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
Every patient deserves a healthy life, every clinician hopes for the tools necessary to keep their patients healthy, and every scientist dreams of discovering the medical breakthrough that will eliminate disease. ALD Connect was established to unite patients, clinicians, and scientists from around the world with a common goal: to improve the lives of ALD/AMN patients by providing an open framework to deliver scientific breakthroughs to the patients who need them.
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the genetic leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Arrivederci ALD’s focus is identifying and funding scientific and medical research that will lead to more effective treatments and a cure for ALD and AMN, as well as engaging in advocacy and awareness efforts to support individuals and families across the country suffering from ALD.
Leukodystrophy Resource Research Organisation Incorporated
The mission of the Leukodystrophy Resource Research Organisation Incorporated is:
- To provide charitable services for the relief of sickness, suffering, distress, misfortune, disability or helplessness of people, and to work proactively to enhance the physical, emotional and spiritual wellbeing of people, in the Leukodystrophy and like Leukoencephalopathy communities of Australasia, without discrimination due to age, sex, race, ethnic background, religion, political beliefs or marital status.
- To provide broad-based and relevant information for the support of people suffering from Leukodystrophy and like Leukoencephalopathies, to their families, their carers, the public at large including health professionals.
- To actively promote and fund Global research into Leukodystrophy and the Leukoencephalopathies in order for it to benefit the Australasian families with the ultimate aim to find a cure.
- To build Global relationships with all like minded charitable organisations from around the world with the common goal to spread awareness, raise money to advance research for treatments and a cure and to provide support, direction and information to affected persons and their families.
- To grow the data base of known affected families in the Australasian region and thus support a larger number of otherwise unassisted families.
- To increase public awareness of Leukodystrophy and the Leukoencephalopathies.
Knockout ALD is a family-run nonprofit that aims to raise awareness of ALD, share the hope of our son Nicholas’s success story, and raise funds to support life-saving research at the University of Minnesota, one of the largest transplant centers in the world and a leader in ALD Research. All money raised by Knockout ALD goes directly to support and push forward adrenoleukodystrophy research projects at the University of Minnesota Leukodystrophy Center. The team of doctors at the U of M are making strides toward a better understanding of ALD and in the development of new therapies to improve outcomes for ALD boys. Knockout ALD also aims to support and give hope to ALD families in their journey once diagnosed in order to connect them with the information, resources, and medical experts needed for the best care.
The Stop ALD Foundation focuses on accelerating the process of developing new knowledge and new therapies for adrenoleukodystrophy (ALD), and works to accelerate implementation of newborn screening for ALD. As well, there is a focus on the adult form of the disease, Adrenomyeloneuropathy (AMN). We also educate the medical profession and the public about ALD/AMN, raising awareness in order to improve detection, diagnosis and treatment. In addition, we serve as a resource to families affected by the condition.
Our mission is threefold: Prevention, Diagnosis & Cure.
© ALD Makes Me Blue