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Community Program Enrollment

In order to develop programs effectively and to obtain the funding necessary to provide these services for free to Hunter syndrome community members, we need to collect important information from you. Please fill out the Community Program Enrollment below to access all of our offerings. You will also be notified when new services are launched. Your information will never be shared. These demographics will only be used as data points. Your name or any other personal information will never be shared outside of Project Alive. This survey is strictly confidential.

Enrollment Form

Medical

Welcome to the medical resources section of Project Alive, where we strive to provide the most reliable and up-to-date information for individuals affected by Hunter syndrome. Our goal is to empower you with the knowledge and support you need to make informed decisions about your health and well-being.

Voice of the Patient

Summary report resulting from an externally conducted Patient-Focused survey Hunter syndrome (MPS II) Cognitive and Behavioral results from the Toileting Ability Survey

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

Muenzer MPS Center

The Dr. Joseph Muenzer MPS Research and Treatment Center is focused on treating patients in the mucopolysaccharidosis (MPS) family of diseases and leading research in this area. The work is led by world-renowned MPS expert, Joseph Muenzer, MD, PhD, Bryson Distinguished Professor. Our team is dedicated to developing new avenues of treatment for children and adults with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

U.S. Experts & Medical Centers for Hunter Syndrome (MPS II)

This document provides a curated list of leading physicians and medical centers in the United States that specialize in Hunter syndrome (MPS II). It includes contact information, areas of expertise, and locations to assist families and referring providers in identifying appropriate care.

Clinical Trials & Studies

Learn more about active clinical trials here. This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.

MPS II Active Clinical Trials

This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.

Behaviors

Learn more about managing behaviors associated with Hunter syndrome here. This page provides insights and strategies for addressing behavioral and emotional challenges. This page serves as informative only. For further information, consult with healthcare professionals experienced in Hunter syndrome. Explore additional resources and support networks to find the best strategies for you. Reach out to us if you need help accessing additional resources.

Accommodating Behaviors in the Classroom & Clinic, Presented by Julie Eisengart, PhD, LP

Julie Eisengart, PhD, LP, the Associate Professor of Pediatrics of the Neurodevelopmental Program in Rare Disease at the University of Minnesota, presents on Accommodating Behaviors in the Classroom & Clinic at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Therapy

Learn more about therapy options for Hunter syndrome here. This page provides information on various therapeutic approaches and interventions. For further information, consult with healthcare professionals experienced in Hunter syndrome. Explore additional resources and support networks to find the best therapies for you and your child. Reach out to us if you need help accessing additional resources.

Therapy for Neurodegenerative Disorders, Presented by Lauren Newhouse, OTD, OTR/L, SWC

Lauren Newhouse, OTD, OTR/L, SWC, a pediatric occupational therapist, presents on Therapy for Neurodegenerative Disorders at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Easterseals is a nonprofit organization dedicated to empowering people with disabilities, older adults, and their families to live independent and fulfilling lives. Through a national network of affiliates, Easterseals offers essential services across various areas, including education, employment, health, community support, and transportation. They also provide resources for caregiving, advocacy, and disability awareness. With over 100 years of experience, Easterseals strengthens communities and supports more than 1.5 million individuals annually.

The Administration for Community Living

The Administration for Community Living (ACL) is part of the U.S. Department of Health and Human Services and is focused on supporting older adults and people with disabilities to live independently and participate fully in their communities. ACL works by funding community-based services, promoting research, education, and innovation, and advancing policies to protect and empower these populations. Their initiatives include federal regulations for adult protective services, tribal consultation policies, and advocacy efforts to challenge stereotypes about aging and disabilities.

Aging in Hunter Syndrome

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

Muenzer MPS Center

The Dr. Joseph Muenzer MPS Research and Treatment Center is focused on treating patients in the mucopolysaccharidosis (MPS) family of diseases and leading research in this area. The work is led by world-renowned MPS expert, Joseph Muenzer, MD, PhD, Bryson Distinguished Professor. Our team is dedicated to developing new avenues of treatment for children and adults with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

STUDY: Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience

Project Alive has funded the "Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience" study. The study survey will be live soon. Please stay tuned for the study link. The attached file is the official study poster presented at WORLDSymposium in February, 2024.

Active Clinical Trials

Education

Welcome to the education resources section of Project Alive. This section is designed to support parents and caregivers in providing the best educational experiences for children with Hunter syndrome. Our goal is to empower everyone involved in a child's education with the knowledge, tools, and support needed to create enriching and successful learning experiences for children with Hunter syndrome.

This workshop discusses all things IEP. Experienced IEP advocate, Lindsay Vose, presents a step by step guide to IEPs.

IEP Workshop Slides

Federal Education Rights

Speech or Language Impairment Eligibility

Disability Rights Education and Defense Fund

Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. Our mission is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.

The National Disability Rights Network

The National Disability Rights Network (NDRN) is an organization that advocates for the civil and human rights of people with disabilities. It represents the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), which are the largest providers of legal advocacy services for individuals with disabilities in the U.S. NDRN works to strengthen these networks through training, technical assistance, and promoting laws that protect disability rights. They also provide resources and support for individuals facing abuse, neglect, discrimination, or legal challenges related to their disabilities.

The Arc is an organization dedicated to promoting and protecting the rights of people with intellectual and developmental disabilities. Their mission is to ensure full inclusion and participation in the community throughout individuals' lifetimes. They focus on advocacy, grassroots initiatives, and providing resources on various aspects of community life, such as education, employment, healthcare, and housing. The Arc also offers digital skills training, annual events, and a network of chapters across the U.S. to support their cause.

Request IEP Help

Project Alive is pleased to offer a program that will connect community members to an experienced IEP advocate, free of charge. Please click the link below to request IEP support. We will then connect you to the advocate to gather more information and find the best way to assist you. Your advocate may attend IEP meetings over the phone, walk you through the IEP agreement prior to signing, and offer guidance in preparation of an upcoming annual IEP meeting or emergency IEP meeting.

Support

Project Alive is a community of families, researchers, and advocates dedicated to supporting you on this journey. Find resources, connect with others, and discover how you can make a difference.

Hunter Syndrome Foundation

The Hunter Syndrome Foundation is a U.S. 501(c)3 non-profit corporation (IRS Tax ID# 46-4296623) with a mission to fund research, support families, and raise awareness of this rare disease. The Foundation was founded in 2013 by parents with children affected by Hunter Syndrome. Hunter Syndrome or Mucopolysaccharidosis Type II (MPS II) is a rare genetic disorder that slowly destroys the body’s cells. This is a rare condition affecting 1 in 150,000 males. There is currently no cure, and the disease is progressive and life-limiting.

MPS Superhero Foundation

At the MPS SuperHero Foundation, we are driven by a passionate commitment to making a difference in the lives of those affected by MPS (Mucopolysaccharidoses). Our core bylaws reflect our dedication to raising awareness, funding crucial research initiatives, and providing vital support to families facing the challenges of MPS.

NORD - Living with a Rare Disease

NORD provides essential support for individuals with rare diseases, including financial assistance, caregiver resources, patient advocacy connections, and access to Centers of Excellence for specialized care. They also host community events like the Living Rare, Living Stronger Patient & Family Forum to foster support and awareness.

EveryLife Foundation

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.

Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community. Our mission is to provide patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—to improve health care services and policies for children.

Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials. The new edition and all archived editions and articles are completely free but are only available online.

Angel's Hands Foundation

Angel’s Hands Foundation: Assists families with medical expenses and funding for medical equipment not covered by insurance.

The Assistance Fund

TAF is currently accepting requests to join the enrollment waitlist for this program. Waitlists are administered on a calendar-year basis. At the end of each calendar year, waitlist applications expire. Patients still seeking assistance must join waitlists for the subsequent calendar year.

Legal

The National Disability Rights Network

The National Disability Rights Network (NDRN) is an organization that advocates for the civil and human rights of people with disabilities. It represents the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), which are the largest providers of legal advocacy services for individuals with disabilities in the U.S. NDRN works to strengthen these networks through training, technical assistance, and promoting laws that protect disability rights. They also provide resources and support for individuals facing abuse, neglect, discrimination, or legal challenges related to their disabilities.

American Bar Association Free Legal Answers - Illinois

American Bar Association Free Legal Answers is a virtual legal advice clinic in which qualifying users can post a civil legal question to be answered by pro bono attorneys licensed in their state. Question topics include family, divorce, custody, housing, eviction, homelessness, consumer rights, finance, work, employment, unemployment, health and disability, civil Rights, income maintenance, juvenile and education law. Eligibility You can use this website IF all of these are true for you: • Your income is low for a family the size of yours. • The value of your checking account, savings account, stocks or bonds are low. • You aren’t in jail or prison. • Your legal problem isn’t related to a criminal charge. • You don’t already have a lawyer to help you with your legal problem. • You are an adult.

LawHelpCA has been prepared for general information purposes only. It does not provide direct legal advice but can connect you to legal aid organizations and referral services. What is LawHelpCA? • LawHelpCA is California’s official and free legal resource. • Reliable information about common legal issues, written by reputable sources on 16 general topics and over 140 specific subtopics • Updated directory of legitimate and pre-screened organizations that offer free or low-cost legal advice and representation

Legal Aid of North Carolina

Phone: 866-219-5262 Legal Aid of North Carolina is a statewide, nonprofit law firm that provides free legal services in civil matters to low-income people to ensure equal access to justice and to remove legal barriers to economic opportunity. With a holistic approach, Legal Aid of North Carolina provides free legal help when people need it most because everyone deserves an advocate when their home, health or livelihood is on the line.

Disability Rights North Carolina

Phone: 919-856-2195 Disability Rights North Carolina is a legal advocacy agency that fights for the rights of people with disabilities in North Carolina. We handle cases involving discrimination, abuse and other rights violations. All our services are at no cost to North Carolinians with disabilities. We are a private, independent, 501(c)(3) nonprofit and a member of the National Disability Rights Network.

American Bar Association Free Legal Answers

American Bar Association Free Legal Answers is a virtual legal advice clinic in which qualifying users can post a civil legal question to be answered by pro bono attorneys licensed in their state. Question topics include family, divorce, custody, housing, eviction, homelessness, consumer rights, finance, work, employment, unemployment, health and disability, civil Rights, income maintenance, juvenile and education law. By using this website, you are asking a lawyer to give you legal help on your specific legal questions. They will be your lawyer for this limited purpose and will not do anything for you other than provide this help. The lawyer will answer your questions through the website and does not have to separately email you an answer or have a phone call or meeting to answer your questions. If the lawyer leaves your question open for a response from you, you will have 10 days to reply before the question closes. When the lawyer is finished answering your question, the lawyer will no longer be your lawyer. If you have a court date or you need to file something with the court by a specific date, a lawyer may not answer your question in time. You should keep looking for a lawyer while you wait to see if a lawyer will answer your question. Unfortunately, not all questions posted to the site will receive an answer. If an attorney cannot assist you, an administrator will notify you. You can use the website to ask 3 different legal questions per year. You can’t create a new account to ask additional questions. You must meet our rules every time you use the website. Eligibility You can use this website IF all of these are true for you: • Your income is low for a family the size of yours. • The value of your checking account, savings account, stocks or bonds are low. • You aren’t in jail or prison. • Your legal problem isn’t related to a criminal charge. • You don’t already have a lawyer to help you with your legal problem. • You are an adult.

At A Glance

See What Is Coming Up!

Take a look at our upcoming community support events. Check our socials for information on how to register or email sarah.napier@projectalive.org for more information.

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Helping Hands Project Nomination

Project Alive aims to support the Hunter syndrome community, especially in times of need. If you know a community member that has a child in the midst of a long hospital stay, recently lost a loved one with Hunter syndrome, or going through other tough times directly related to their child's diagnosis, you can nominate them to receive support. Project Alive will send a small gift to help out. Typically, we send food gift cards, flowers to memorial services and funerals, gas gift cards, and the like. We are unable to help with bills, rent, or other cash needs. If you'd like to nominate someone, please submit the nomination at the link below.

Helping Hands Form

Adulthood

Affected Individual Checklist (Adulthood)

The document is a checklist of resources for individuals with physical disabilities. It covers various areas such as mobility and accessibility aids, assistive technology, medical and rehabilitation services, housing and independent living, transportation services, employment and education support, financial assistance, legal advocacy and disability rights, and community and support networks. The checklist provides links to organizations that offer assistance in each area, as well as detailed steps and information for applying for various programs like reduced fare transportation, vocational rehabilitation, workplace accommodations under ADA, scholarships and grants, and Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). It also emphasizes the importance of connecting with support networks and advocacy organizations.

National Council on Independent Living

The National Council on Independent Living (NCIL) is the longest-standing national cross-disability, grassroots organization dedicated to the rights and full inclusion of people with disabilities. Established in 1982, NCIL represents numerous organizations and individuals, advocating for systemic change to enhance the human and civil rights of people with disabilities across the United States. They offer resources, training, and advocacy initiatives, and host events such as their Annual Conference on Independent Living.

The Administration for Community Living

The Administration for Community Living (ACL) is part of the U.S. Department of Health and Human Services and is focused on supporting older adults and people with disabilities to live independently and participate fully in their communities. ACL works by funding community-based services, promoting research, education, and innovation, and advancing policies to protect and empower these populations. Their initiatives include federal regulations for adult protective services, tribal consultation policies, and advocacy efforts to challenge stereotypes about aging and disabilities.

Easterseals is a nonprofit organization dedicated to empowering people with disabilities, older adults, and their families to live independent and fulfilling lives. Through a national network of affiliates, Easterseals offers essential services across various areas, including education, employment, health, community support, and transportation. They also provide resources for caregiving, advocacy, and disability awareness. With over 100 years of experience, Easterseals strengthens communities and supports more than 1.5 million individuals annually.

The Job Accommodation Network

The Job Accommodation Network (JAN) provides free, confidential guidance and resources to support workplace accommodations for individuals with disabilities. It helps employers, employees, and others navigate the Americans with Disabilities Act (ADA), explore accommodation solutions, and improve workplace inclusion. JAN offers training, best practices, webcasts, and tools like the “Situations and Solutions Finder” to share practical ideas for accommodating diverse needs.

U.S. AbilityOne Commission

The AbilityOne Program is a U.S. government initiative that creates employment opportunities for individuals with disabilities, including veterans and wounded warriors. It partners with nonprofit agencies to provide high-quality products and services to federal agencies, such as military equipment, healthcare supplies, and facility management. The program supports over 39,000 Americans with disabilities and contributes to national security and economic growth.

The National Mobility Equipment Dealers Association (NMEDA)

The National Mobility Equipment Dealers Association (NMEDA) is a nonprofit trade association representing the automotive mobility industry. Their mission is to expand opportunities for individuals with disabilities to safely drive or be transported in vehicles equipped with adaptive mobility equipment tailored to their needs. NMEDA offers resources for consumers, auto mobility professionals, and partners, including education, advocacy, and a Quality Assurance Program (QAP) to ensure safety and reliability. They also provide tools like dealer locators, industry directories, and funding options to support accessibility.

The National Disability Rights Network

The National Disability Rights Network (NDRN) is an organization that advocates for the civil and human rights of people with disabilities. It represents the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), which are the largest providers of legal advocacy services for individuals with disabilities in the U.S. NDRN works to strengthen these networks through training, technical assistance, and promoting laws that protect disability rights. They also provide resources and support for individuals facing abuse, neglect, discrimination, or legal challenges related to their disabilities.