This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Showing posts with label Education. Show all posts
Showing posts with label Education. Show all posts

Thursday, March 23, 2023

Advocacy and Support Organizations

American Partnership for Eosinophilic Disorders (APFED) Working diligently to advocate for increased funding, state and federal legislation, and medical coding to benefit those affected by eosinophilic disease 

American Porphyria Foundation

Mast Cell Action was founded in 2016 to offer support to the mast cell disease community, their families, doctors and researchers. To raise awareness of disorders resulting from mast cell activation, increase vital research in this area and strive for better diagnostics and treatment.
 
The Mastocytosis Society is a non-profit organization dedicated to supporting patients affected by Mastocytosis and Mast Cell Activation Disorders as well as their families, caregivers and physicians through research, education and advocacy.

MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

MPN (Myeloproliferative Neoplasms) Research Foundation 

The Oley Foundation Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

PACIFHAN (Patient Organizations for Chronic Intestinal Failure and Home Artificial Nutrition)
To work together to promote the international sharing of information and resources to improve the quality of life of Home Artificial Nutrition patients.

National Organization for Albinism and Hypopigmentation (NOAH)

National Organization for Rare Disorders (NORD)

The Ehlers-Danlos Society

Trauma Research Foundation
 
Change the Air Foundation
Dedicated to increasing awareness and research regarding the negative health impacts of indoor air quality, often as a result of water damage and mold.


 
 



Dysautonomia Foundation, Inc.

Digestive Disease National Coalition

Adrenal Insufficiency United

Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT)

Immune Deficiency Foundation

International Foundation for Functional Gastrointestinal Disorders


Kyphoscoliotic Heart Disease

American Porphyria Foundation

American Thoracic Society

American Society of Gene & Cell Therapy (ASGCT)

Daybreak Children's Rare Disease Fund

Family Caregiver Alliance

Healing Hugs Haven LLC

Hermansky-Pudlak Syndrome Network

Hope for Hypothalamic Hamartomas



 The Myelin Project
Myocarditis Foundation

 


Rare and Undiagnosed Network (RUN)

Spinal CSF Leak Foundation


Vasculitis Foundation

Wilhelm Foundation - the Undiagnosed

Worldwide Syringomyelia & Chiari Task Force

Research!America


 
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Sunday, March 25, 2018

Resources and Information About Giftedness in Students and Adults

This is a list of links to resources and other things of interest to families with gifted individuals.  Many people with disabilities are also gifted, for which the term is 2E for "twice exceptional".  Finding appropriate educational placements is often already difficult for a child with Autism or any number of other "learning disabilities" but when you add in giftedness it can become almost impossible to find placements that are appropriate and work well.  Families often find that they need to be creative in putting together the pieces of their child's educational plan.

 GENERAL:
Gifted Development Center (GDC) "Since 1979, the Gifted Development Center (GDC) has served as a global leader in the assessment and development of gifted individuals of all ages. We support giftedness throughout the lifespan. Through our work, we have changed the lives of over 6,000 children and their families worldwide. We also build awareness and understanding of giftedness, through research, advocacy and development of national policy.

Our philosophy is child-centered: we put your child first. We focus on understanding your child’s inner world (overexcitabilities, emotions, perceptions, relationships, personality, etc.), rather than on his or her potential for success. We see giftedness as a pervasive way of being in the world, not as being "gifted in...."

We provide assessment, advocacy, counseling, books, articles, Advanced Development Journal, and a Speakers Bureau to educate the public about the needs of gifted children and adults."

SENG- Supporting the Emotional Needs of the Gifted

EVALUATION and EDUCATIONAL RESOURCES:
Hoagies’ Gifted Education Page
Gifted and Talented .com (Stanford program)
Gifted Homeschoolers Forum
Internet Resources for Homeschooling Gifted Students
WHAT IS GIFTEDNESS, AND WHAT ARE GIFTED PEOPLE LIKE?
What is Giftedness? (from the website of GDC)
My thoughts on what it means to be a gifted adult. . .and how it might help you
Discovering the Gifted Ex-Child
The Sad Tale of William James Sidis - The Smartest Man Who Ever Lived 
This Teenager Will Revolutionize Nuclear Power | Archives | NBC News
Why Genius Doesn't Matter | Taylor Wilson on Impact Theory

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