Hypotonic Links: Resources

Here is a compilation of a few handpicked links to information, resources/programs, and support.


John Hopkins Hypotonia Center:
This site is maintained by John Hopkins Medicine. They have a center dedicated to the treatment and study of Hypotonia within their McKusick-Nathans Institute of Genetic Medicine. The terminology can feel a little clinical and I believe the information offered is from a reliable source.

This site is maintained by Boston Children's Hospital. It offers basic information regarding Hypotonia including causes, testing, and treatments. I believe the information offered is reliable, but it is very surface information since the severity of Hypotonia varies in each individual.
This site offers various articles regarding physical therapy and supplements for children/adults with Hypotonia. These articles are not written by medical professionals (I can't honestly say that about all of them, but the ones I reviewed were not), but are reviewed for content. Please review the information offered and consult your physician or therapist prior to implementing any of the sites suggestions.

Hypotonia Survival Guide:
This site is not maintained by members within the medical community. It is from another parent and the information should be carefully considered and researched.


National Dissemination Center for Children with Disabilities (NICHCY):
This page will offer you an overview of Early Intervention (EI) including where to go where to go for help, who determines eligibility, who pays for services, and what is included in Early Intervention. Don't just skim over this information. It is VERY important to know what is available, what services your child is eligible/entitled to receive, and how the program works. A word of CAUTION: each state varies in how they administer Early Intervention so make sure to look up and contact your states program.

For example: Here is the link to Florida's EI program: Early Steps

You will also find on the NICHCY site there is a link that will help you determine what programs are offered in your state...not just EI programs. Here's the link: State Organization - State by State

Social Security Disability Benefits - Child Under 18:
You will never go through a more frustrating process than trying to apply for disability. I have tried and at this point in time have not succeeded in obtaining any benefits for Rae. There is a ton of paperwork you have to fill out online. Make sure you have the time to sit at your desk with your medical file (mine is a 4 inch thick orange binder) and all your doctors addresses/phone numbers before you start. You can come back to it, but personally, it was best to get it out of the way at one time. This can be a long, uphill battle that may end up in hiring a lawyer so be prepared to fight if necessary. A word of CAUTION: They DO NOT offer a print option. You must print out every single screen individually if you want a paper copy of your application.


This is one of the first (and almost only) support groups I found online. I don't use it as often as I did when our journey first started, but it can be a helpful support group for you, your family, and your friends.

Facebook: Hypotonia Parent Connection:
Unfortunately, I can not offer you a link to this page. It is only accessible to Facebook members and you must be added to the group. The page is private so it offers a very caring, supportive, non-judgemental place to share the good, the bad, and the downright ugly aspects of our world. By far it has been the best support for me and I know the other parents would agree. Look us up!

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