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The Myelin Project

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Nonprofit Overview

Causes: Brain Disorders Research, Health, Medical Research, Neurology & Neuroscience Research, Specifically Named Diseases Research

Mission: We are a 501(c)3 non-profit organization focused on improving the quality of life for those living with adrenoleukodystrophy (ALD) through research, advocacy, education, and family support.

Target demographics: Research, Advocacy, & Family Support

Direct beneficiaries per year: 125 schools sending ALD educational packets to biology classes

Geographic areas served: Internationally

Programs: Odone Family Support Fund to provide financial assistance to low-income ALD patients and their families.

Donor & Volunteer Advisory

This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

10 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

I utilize "Lorenzo's Oil" and the companion curricular activities provided by the Myelin project in my senior Advanced Chemistry course. It provides a great real-world example of science, the scientific method, medical ethics, and various other associated topics. I truly appreciate how helpful the people at The Myelin Project have been with numerous questions throughout the years.

General Member of the Public

Rating: 5

I am a science teacher. In my NYS Living Environment (Biology) course, I show the film and incorporate it with organic chemistry, enzymes, genetics and "trade offs" / ethics as well as drug testing, etc. The film brings out real world applications and examples associated with these topics.
It is a well told story that has an impact on students.

Donor

Rating: 5

I teach college biology, biochemistry courses and incorporate this story into my curriculum. The students respond to the cinematic format and can identify components of the lecture in the beautifully told story of the Odone family.

General Member of the Public

Rating: 5

I teach 7th grade biology and have been incorporating the story of Lorenzo for several years. The video and brochures you sent were a huge asset to this lesson! Thank you so much, Vicki Klahn 7th grade - Glynn Middle School - Brunswick, Georgia

1

General Member of the Public

Rating: 5

As a high school teacher I greatly appreciate the effort of this fantastic organization. My students had researched genetic diseases and viewed the video "Lorenzo's Oil". The impact on the students was profound and acute. Their interest to understand the mechanics of the disease and the types and research was heightened to an extreme level.

I believe that my students, for the first time, understood that the impact of research in one topic leads to many answers and questions in other areas. Thanks to your foundation....the effect of this film was contagious.

2 Mollie H.

Client Served

Rating: 5

My son has adrenoleukodystrophy. He is 11 years old. he underwent a bone marrow transplant in April of 2014. I quit my job to be with him. Our family has gone through many hardships financially especially. Our case worker at the hospital put us in touch with this program. This program and its grant helped put food on our table and made sure our power and water stayed on when there was no way we could afford it.. Mr Benton are facilitator was absolutely amazing he had a lot of information and was a great support. I cannot thank them enough for their help!!!

1

Professional with expertise in this field

Rating: 5

I have used the film "Lorenzo's Oil" as a teaching tool in my biology and Anatomy & Physiology classes for years. The Myelin project has been a wonderful supporter by supplying teaching resources as well as current information on ALD and as other de-mylenation disorders. We use the materials to study genetic disorders, current research in biology and bioethics in the classroom. My follow-up written assignments correspond beautifully with the new Common Core writing standards. My students are reached at so many different levels with this type of instruction. A BIG "thank you" to Lorenzo, Augusto Micheala and so many others for sharing their story with the world. Support, both financial and educational, allow this message to be shared.

PS: My original and favorite use of the film is in teaching the REAL scientific method to my students. Thank you Augusto for teaching people everywhere to never stop asking questions. Science is the search for answers to questions about nature.

1

General Member of the Public

Rating: 5

The Myelin Project sent some amazing classroom resources for my AP Biology class. Awesome non-profit organization!

1 Anna23456

Volunteer

Rating: 5

The Myelin Project is an outstanding non-profit, providing resources for people in need and working day and night to fund the research that will one day produce a cure.

4

Volunteer

Rating: 5

Great family non-profit organization aimed at funding research for myelin repair.