Being educated to the extent possible is important for every MPS child, regardless of prognosis.
Many types of therapy can help retain physical and mental skills longer, including physical, occupational and play therapy. For some children, speech therapy can be helpful. Interacting with other children and adults in a structured setting is challenging for many MPS children, but it’s also very important to maintaining social and intellectual skills to the extent possible. And don’t forget giving mom, dad and other caregivers a break!! That’s important too.
All, or nearly all, MPS children require a classroom setting designed for special education children, although there are some exceptions. This is an important and sometimes complex topic, so we have created this section to contain material we come across that is relevant to those concerned with advocating for their MPS child in the educational system. We hope you find it helpful.
The Coordination of Rare Diseases at Sanford (CoRDS) registry is a United States disease registry that includes all rare diseases. The CoRDS registry is headquartered at Sanford Research in Sioux Falls, South Dakota and is supervised by Dr. David Pearce and Dr. Chun-Hung Chan and managed by Liz Donohue and Lauren Beaumont. If you want to enroll your child in the registry, this post contains the information and links to tell you what you need to know. Continue reading →
Weighted blankets and vests are in widespread use as therapeutic devices for children and adults with sensory conditions, most commonly ADD and autism. Several parents of children with MPS disorders report that their children benefit from the use of a weighted blanket. Weighted blankets are often used for children with sensory processing disorders, which is … Continue reading →
MPS Society Continuing Education Scholarship Program If you or an immediate (United States) family member have an MPS disorder, you are eligible for an MPS Society scholarship. Here’s the info from the U.S. MPS Society. 2012 Scholarship Applications are now available! Applications must be received by March 15, 2012. Applicants will be notified of the … Continue reading →
The clinical trial plan for the U.S. natural history study for Sanfilippo Syndrome Type B has just been published in clinicaltrials.gov. It is essentially the same plan as the current Natural History study for Type A. We have reproduced it here and linked to the official clinical trials record. This is further evidence that Shire is proceeding rapidly with a plan to carry out clinical trials of enzyme replacement for MPS 3B.
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Care and share this story! Help your Facebook friends learn more about Sanfilippo syndrome. A message from the Global Genes Project We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE Disease Day. If you have an MPS-centered … Continue reading →
Dublin, Ireland – November 18, 2011 – Fourteen caregivers from around the world have been announced as Recipients or Distinguished Honorees in the inaugural Shire BRAVE Awards, an international program that aims to recognize everyday people who serve as caregivers. Launched by Shire in June 2011, the BRAVE Awards is the first and only awards … Continue reading →
Hopeful Parents blog As the parent and family member of a special needs child, you need to connect with other special needs parents through the blog Hopeful Parents. It’s very well done. Links to good recipes for kids, links to positive, helpful articles, lots of good posting on how to maintain a positive outlook. The … Continue reading →
From the mother of a son with autism comes this thoughtful post about the reasons for getting an iPad for a special needs child. My grandson Reed, who has MPS IIIA, is nevertheless an iPad ninja and loves them! Right now, he’s using his Dad’s mostly, but that’s going to change soon. He plays games, … Continue reading →
You have to find some way to rest knowing your child is safe. Tomorrow is another long and exhausting day. The answer for many parents is to create a ‘safe room’ for their child or children. Just be absolutely certain you have quick access to the child’s special room at any time in the event of a fire or other emergency. Here are some tips we’ve gathered to help you with ideas for creating a safe refuge for your child — and peace for yourself. Continue reading →
Special iApps-Educational apps to help your MPS child learn The following material is taken directly from the special iApps website. Follow the links to their site to find out more. Special iApps is a non-profit social enterprise, dedicated to helping children learn. We develop apps for the Apple® iPad®, iPhone® and iPod touch®. All our … Continue reading →
“These common findings are indicative of a system that’s lacking in standards and oversight and is easily manipulated by folks who are not putting the interests of taxpayers and special needs kids first,’’ Auditor Suzanne M. Bump said yesterday. So says a Massachusetts state auditor about the state’s special needs education agencies. My comment: Greed and graft tick me off, especially when it comes at the expense of special needs kids. Continue reading →
This useful document was written by someone in the Graduate program in Psychology at James Madison University. It is a summary of Sanfilippo syndrome and its characteristics for their students training to be school psychologists. The first part is a good summary of what Sanfilippo syndrome is all about, and what children with the disease experience, written primarily for the person who knows nothing about the disease. The second part of the document is a discussion of the role of the school psychologist in helping Sanfilippo children, and what actions are appropriate and needed. Continue reading →
Being educated to the extent possible is important for every MPS child, regardless of prognosis.
All, or nearly all, MPS children require a classroom setting designed for special education children, although there are some exceptions. This is an important and sometimes complex topic, so we have created this section to contain material we come across that is relevant to those concerned with advocating for their MPS child in the educational system. We hope you find it helpful.