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.
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.
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
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 Science Foundation
European Autism Interventions
Contact Your Congressman for issues regarding special needs, research funding and raising awareness.
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
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.
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.
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.
When shopping online, use these services and a portion of how much you pay goes to the Phelan-McDermid Syndrome Foundation.
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