Resources


PMS EXPLAINED: Medical Assessment and Monitoring of those with Phelan-McDermid Syndrome, a review of the literature and practice parameters from the Journal of Neurodevelopmental disorders. A good resource for doctors.

http://www.jneurodevdisorders.com/content/6/1/39


BASIC PRIMER: Study on Phelan-McDermid Syndrome covers cause, diagnosis, treatment, medical interventions and more. A good explainer for anyone from family to teachers to medical personnel.

http://www.ukessays.com/essays/psychology/study-on-phelan-mcdermid-syndrome-psychology-essay.php


ABLE Act Explained by major special needs groups. Find out how the special savings accounts will affect you, what they can be used for and how your special needs child will benefit.

National Down Syndrome Society

National Fragile X Foundation

Autism Speaks

Parenting Special Needs Magazine

 

Americans with Disabilities Act prohibits discrimination and ensures equal opportunity for people with disabilities in employment, government services, public accommodations, commercial facilities and transportation.

About the ADA

Department of Education rules


Autism awareness, which tell you all you need to know about autism specturm disorders.

Autism Speaks

Autism Science Foundation

European Autism Interventions

 

Contact Your Congressman for issues regarding special needs, research funding and raising awareness.

http://www.congressweb.com/kaki/legislators

 

Federal agencies that are key to fostering research into Phelan-McDermid Syndrome and other rare diseases.

National Institutes of Health

National Institute of Neurological Disorders and Stroke

National Insitute of Mental Health

 

Individualized Education Programs (IEP) can be confusing, but are very important to the success of your child in schools.

U.S. Department of Education

Understood.org

About.com

 

Individuals with Disabilities Education Act (IDEA) guarantees those in with special needs an education.

American Academy of Pediatrics clinical report by Paul H. Lipkin and Jeffrey Okamoto

Disability Scoop report on AAP report

Center for Parent Information and Resources

Department of Education

 

Parenting Special Needs Magazine is a free online magazine and an excellent resource for parenting articles and information as it relates to parenting special needs.

http://parentingspecialneeds.org/

 

Phelan-McDermid Syndrome International Registry allows families to become part of a growing medical and research database through personalized, detailed profiles of those diagnosed with PMS. It's free to register.

https://pmsiregistry.patientcrossroads.org


Rare disease and special needs groups that have a similar interest as the Phelan-McDermid Syndrome Foundation in promoting awarenes and supporting research to help families around the world.

National Organization of Rare Disorders

Global Genes Project

Genetic and Rare Disorders Organization

 

Seizures have been found to be a medical condition that affects a number of those with PMS.

Practice parameters for PMS include EEG and MRI.

Dr. Jimmy Holder's seizure talk at the 2014 family conference.

Six Italian patients with abnormal EEG findings.

Abnormal MRI findings in patients with PMS.

Rare Epilepsy Network Patient Powered Research Network.


Social Security Compassionate Allowance includes Phelan-McDermid Syndrome, it meets Social Security disability standards so recipients can begin receiving benefits.

U.S. Social Security Administration

Social Security compassionate allowances


Special Needs Trusts are a way to protect assets of a person with special needs to take care of some expenses without jeopardizing any governmental subsidies the person may receive.

http://www.americanbar.org/content/dam/aba/publishing/rpte_ereport/te_lewis.authcheckdam.pdf

http://estate.findlaw.com/trusts/special-needs-trusts-faq-s.html

http://www2.nami.org/Content/NavigationMenu/Find_Support/Legal_Support/Special_Needs_Estate_Planning/Special_Needs_Trust_Primer.htm

 

When shopping online, use these services and a portion of how much you pay goes to the Phelan-McDermid Syndrome Foundation.

IGive.com

Amazon Smile


Use iGive.com, Amazon Smile together to double donations

You’ve heard us urge shoppers for a number of years to use iGive.com when shopping online.

Through iGive you can shop at hundreds of the most popular stores’ online sites and a portion of your purchase price is donated back to the Phelan-McDermid Syndrome Foundation.


We recently teamed up with AmazonSmile.com, which offers a similar benefit for non-profits. Shop Amazon Smile and a percentage goes to PMSF.


Did you know you can use both services to multiply how much is donated to PMSF? You sure can. Just start at iGive.com/Amazon to boost your donations.


To find out more, click here. For a Webinar explaining how both work together, click here.


Local fund-raising events


Annie's Golf Classic in Trophy Club, Texas

Logan's Heroes in Millington and Davison, Michigan

Giving Challenge in Sarasota County, Florida

Last Updated on Friday, 15 January 2016 13:34
 
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