…and Fabry disease, but has yet to be tried for the mucopolysaccharidoses such as MPS II. EET works by having a small molecule drug (a “chaperone”) attach itself to the defective enzyme, in this case iduronate sulfatase, and stabilizing it so it can do its intended job: to degrade the mucopolysaccharides in the cell. In order to prepare compounds for EET that are suitable for testing we need to synthesize small molecules that resemble the sugar iduronic acid, the component of the mucopolysaccharides that is degraded by iduronate sulfatase. The…
…treated or not treated with cochlear implant (102.10 or 102.11 for children) Applicants with MPS or ML also are eligible for an expedited application process called compassionate allowances, which seeks to pay benefits to those with very severe and obvious disabilities. Compassionate allowances enable individuals to qualify based on minimal medical evidence. The Application Process The application can be completed online or with a representative from the SSA. Applications for children must be completed in person and can’t be submitted online, however an adult can choose either method. http://www.disability-benefits-help.org/content/application-process Before…
…medications, supplements, massage, acupuncture and chiropractic care. Pain control medications are broken down by class and selected based on the specific pain symptom being treated and the ability of the individual to tolerate medication side effects. Over the counter oral medications such as aspirin and ibuprofen are usually the first lines of defense in treating pain. They work by reducing inflammation and reducing the pain associated with headaches. Prescription medications such as Darvocet, Percocet (Tylenol combination), and Celebrex are also commonly used. Anti-inflammatory medications can also be administered through a…
…NBS! Every fourth Wednesday of the Month at 1:00pm EST: National MPS Society’s Advocacy Committee Meeting – Email info@mpssociety.org to receive the Zoom login information for this monthly meeting! May 15: Speakers’ Bureau Virtual Capitol Hill Meetings – Advocates from across the country will meet with law and policy-makers in Washington D.C. Million Dollar Bike Ride Saturday, June 08th Register Online Long Beach Race for Rare Saturday, October 12th 9:00 – 1:00 EDT Register Online Jingle Bell Run Friday, December 20th 8:15 – 12:00 EST Register Online Legislative Priorities…
…ordered an MRI to check out his brain (I’ve been wanting this so bad since he was younger) which then came back abnormal. That’s when he sent us to a specialist out of town to get a sleep study ordered and to meet with a neurologist. For the first time in my life as a mom, I felt like we were truly going to be getting our answers through all of this. So here we were, another hospital, another doctor. And as much as I was dreading it, I knew…
KARINA’S BIRTHDAY FUNDRAISER! Karina was diagnosed with Sanfilippo syndrome (MPS IIIA) when she was five years old. Sanfilippo is a neurological storage disorder causing progressive damage to the body. As a toddler, she loved to run, sing and play. As the disease has progressed, it has caused her to lose the ability to walk, talk and eat by mouth. Yet, she courageously fights the disease and shows all those around her what unconditional love really means. Sanfilippo is a terminal disorder, many do not live past their teenage years. She…
Link to purchase disposable swim diapers from My Pool Pal www.mypoolpal.com Link to Duraline Medical Products for specialty undergarments www.arktherapeutic.com Link to Adaptive Mall.com, a resource for medical equipment southpawenterprises.com Vehicle Conversion…
…care at home. FCA now offers programs at national, state and local levels to support and sustain caregivers. www.caregiver.org National Family Caregivers Association The National Family Caregivers Association (NFCA) supports, empowers, educates, and speaks up for the more than 50 million Americans who care for a chronically ill, aged, or disabled loved one. NFCA reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. www.nfcacares.org The Courageous Parents Network CPN is a destination created by parents,…
Thanks for visiting my page! Please help me with my fundraising by contributing to this great cause. Making a donation is easy and safe- simply click the “Donate Online” button in the upper right to donate. Make sure to bookmark this page and come back often to check on my progress! My name is Catriona Humphrey and I have been a parent to four beautiful children for almost twenty years. However, I’ve spent the last couple of months now knowing that I am a parent to a child who will…
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