What Is the Myelin Project and How Does It Help Families With Ald?
The Myelin Project
This system has non appeared on the IRS Concern Master File in a number of months. It may have merged with another arrangement or ceased operations.
Mission
Our mission is to:
- Fund Medical and Scientific Research
- Raise sensation of ALD and AMN
- Induce international scientific collaboration
- Advocate for ALD newborn screening
- Find a cure for demyelinating illnesses
Founded in 1989 by Augusto and Michaela Odone for their son, Lorenzo, who suffered from adrenoleukodystrophy (ALD), The Myelin Project was established to accelerate medical reserach then that future children with ALD would not take to feel what the Odone family unit had to endure. The Odones' story was dramatized in the 1992 Universal Studios movie "Lorenzo'due south Oil" starring Nick Nolte and Susan Sarandon.
Ruling year
1988
Master Officer
Patti Chapman
Main accost
P.O. Box 39
Pacific Palisades, CA 90272 USA
Evidence more contact info
EIN
52-1545992
NTEE code
Neurology, Neuroscience (H96)
Encephalon Disorders (H48)
Medical Specialty Enquiry (H90)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Sign in or create an account to view Form(south) 990 for 2019, 2018 and 2016.
Register now
Programs and results
What we aim to solve
This profile needs more info.
If it is your nonprofit, add a problem overview.
Login and update
Our programs
SOURCE: Cocky-reported past organisation
What are the system's current programs, how exercise they measure success, and who exercise the programs serve?
California ALD Newborn Screening Campaign
Adrenoleukodystrophy (ALD) is a life-threating disorder that oftentimes causes adrenal gland failure, too equally neurologic dysfunction, affecting the spinal cord and/or encephalon. In its about devastating form, children develop speedily progressing brain affliction. Blood or bone marrow transplantation is constructive in arresting progression of this otherwise fatal illness, but information technology is only effective when performed at the primeval onset of brain interest.
The critical aspect in achieving optimal outcomes is a means of detection of the disease earlier it results in too much damage to the brain. In this circumstance, newborn screening for ALD could prove extremely important in making a difference in this devastating disorder. I can say with confidence that if children are diagnosed at nascence, healthcare practitioners will be in a better position to be able to offer viable lifesaving treatments. Newborn screening translates into significantly improved outcomes for patients and their families.
The Myelin Project has sponsored bill CA Assembly bill 1559 to add ALD to CA's newborn screening program for the first fourth dimension in CA's history.
International Scientific Conference on Myelin Disease
Our international scientific conference volition be held at the Edinburgh Hilton Airdrome hotel. Talks will focus on Schwann cells in the central nervous system in relation to myelin disorder, and research pertaining to myelin loss, remyelination, and axon loss in genetic myelin disorders.
At that place will also be discussion of the medical efficacy of newborn screening of adrenoleukodystrophy (ALD). Featured speakers are from the following medical and bookish institutions:
Featured Speakers from:
Stanford School of Medicine
University of Edinburgh, Medical Schoolhouse
Queens Medical Inquiry Institute
Centre for Neuroregeneration
Centre for Regenerative Medicine
The goal is increase scientific enquiry collaboration and understanding in the field of myelin affliction.
Odone Family unit Support Fund
The Odone Family Support Fund (OFSF) was launched in 2015 to support depression-income families living with all forms of adrenoleukodystrophy (ALD).
Information technology is our mission to improve the quality of life for those living with all forms of ALD. We are committed to lessening the financial brunt of care while providing condolement to patients and their families with food, medical supplies not covered insurance, utility payments, etc.
Where we work
This profile needs more than info.
If it is your nonprofit, add together geographic service areas to create a map on your profile.
Login and update
External reviews 
Goals & Strategy
SOURCE: Self-reported past organization
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting touch on
Four powerful questions that crave reflection almost what really matters - results.
What is the organization aiming to accomplish?
The Myelin Project is focused on funding medical inquiry and adding adrenoleukodystrophy to all state newborn screening programs. We are currently sponsoring a Assembly beak 1559 which if passed would require all newborns in CA exist screened for this final genetic affliction.
What are the system'due south key strategies for making this happen?
Our Semi-Annual International Scientific Conference is the oldest myelin inquiry briefing in the world. These conferences bring the leading scientists around the world together to share clinical and research results.
We are currently sponsoring Associates bill 1559 which if passed would require all newborns in CA exist screened for adrenoleukodystrophy (ALD) allowing newborns to be diagnosed and treated before its as well late.
What are the organization'southward capabilities for doing this?
Nosotros are comprised of an international network of ALD and AMN patients, families, volunteers, and researchers. The Myelin Project has branches in The United States, The United Kingdom, and Germany. We have also combined forces with national and international alliance organizations to pool the efforts of like-minded non-profits. That's why we joined the ALD/AMN Global Brotherhood, The Leukodystrophy Alliance, and ALD Connect.
What take they achieved and so far and what's next?
California Assembly Beak AB 1559, to add adrenoleukodystrophy (ALD) to the state'south newborn screening programme, has passed the Land Associates in a unanimous 79-0 vote. This means the bill is halfway there.
The nib now moves to the country Senate where we have already scheduled meetings with legislators to urge them to support this historic bill to help relieve the lives of futurity children with ALD.
Financials
The Myelin Project
lock
Unlock financial insights by subscribing to our monthly plan.
Subscribe
Unlock nonprofit financial insights that volition help you brand more informed decisions. Try our monthly plan today.
- Analyze a variety of pre-calculated fiscal metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Desire to see how you lot can enhance your nonprofit research and unlock more insights?
Learn more than nearly GuideStar Pro.
Operations
The people, governance practices, and partners that make the organization tick.
lock
Connect with nonprofit leaders
Subscribe
Build relationships with key people who manage and pb nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a diversity of pre-calculated financial metrics
- Access beautifully interactive analysis and comparing tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
lock
Connect with nonprofit leaders
Subscribe
Build relationships with fundamental people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a diverseness of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to come across how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
The Myelin Projection
Board of directors
as of 11/8/2017
SOURCE: Cocky-reported by system
Board chair
Patti Chapman
No Affiliation
John Gernhart
Sharon Granetz
Patti Chapman Secretary
Diane Zmrzel
Jean Kelley Treasurer
Hyman Abadi
Augusto Odone President
Source: https://www.guidestar.org/profile/52-1545992#:~:text=The%20Myelin%20Project%20is%20focused,for%20this%20terminal%20genetic%20illness.
0 Response to "What Is the Myelin Project and How Does It Help Families With Ald?"
Post a Comment