Support. Research. Hope. The mission Cure SMA Canada Society is: To fund the best possible Canadian research in search of a treatment or cure for Spinal Muscular Atrophy. To support Canadian families and individuals affected by Spinal Muscular Atrophy in every province and territory. To work closely with CURE SMA (USA) and the Scientific Advisory Board in our selection of recipients of research and trial grant monies. To offer and supply information to any Canadian requesting it. To support Canadian families and individuals affected by SMA as newly diagnosed, during the affected person’s lifetime and the family after an affected person passes. To offer support for activities that bring families and individuals together mutually benefitting all that are involved. (example: the annual SMA conference, SMA Family Camp, Parent’s retreat) To support individuals with their fundraising activities benefitting Cure SMA Canada. To supply members with newsletters for the purpose of information, connecting and communication. To connect families to each other through various methods including our website, social media, through our national office, our newsletter and group activities. To help families realize they are not alone with the diagnoses of SMA. That Cure SMA Canada is here for them and will support them in any capacity we can. We understand, because we too are affected by SMA or are parents of children born with Spinal Muscular Atrophy. (Read More...)
The PA Tourette Syndrome Alliance is a non-profit organization that promotes awareness and acceptance, provides education, and assists families, schools and communities while advocating for individuals with TS. The services provided by PA-TSA are focused on increasing understanding of the disorder and providing proven accommodations and strategies so a child or adult diagnosed with TS can succeed. Tourette Syndrome can be a very complex disorder and many people do not have a full understanding of these complexities. PA-TSA's programs and services include providing information, education, support and disability advocacy. They strive to promote understanding of Tourette Syndrome in order to promote acceptance of those diagnosed! (Read More...)
Family Resource Center on Disabilities (FRCD) is a training center that provides parents of children with disabilities with information, training, assistance, and support. FRCD helps a wide variety of families and professionals on local, state, and national levels every day through informational workshops, phone trainings, and community outreach. We help you communicate more effectively with school professionals, obtain appropriate services for your child, effect positive change in your child’s school. You can call us at (312)939-3513 or send an e-mail to info@frcd.org. Our office hours are from Monday thru Friday 9 am to 5 pm. Visit our website at us online at www.frcd.org (Read More...)
Out of the FOG was launched in 2007 to provide information and support to the family members and loved-ones of individuals who suffer from a personality disorder. Dealing with a loved-one or family member who suffers from a personality disorder can sometimes feel like navigating through a fog. FOG stands for Fear, Obligation, Guilt - feelings which often result from being in a relationship with a person who suffers from a Personality Disorder. The FOG acronym was coined by Susan Forward & Donna Frazier in their book Emotional Blackmail. It is our hope that this site may help some navigate out of the FOG in their own lives. (Read More...)
Claire’s Place Foundation, Inc. is a 501(c)(3) non-profit organization providing support to children and families affected by cystic fibrosis (CF). Claire’s Place Foundation is named in honor of Claire Wineland who lived with CF her entire life and passed away at the age of 21. Claire was an activist, author, TEDx Speaker, social media star and received numerous awards. Claire’s foundation was a way for her to assure that others living with CF enjoyed the same hope, strength and joy that she enjoyed. Recipient of Los Angeles Business Journal’s “Small Nonprofit of the Year,” the foundation provides grants to families affected by CF, offering both emotional and financial support. Today, Claire’s Place Foundation continues to carry on Claire’s legacy. For more information visit www.clairesplacefoundation.org (Read More...)
The Yellow Pages for Kids User Guide will teach you how to be a more effective advocate. Learn how to build your team, get educated about your child's disability, find special education advocacy training, locate a parent group, and get legal and advocacy help. You may also want to subscribe to The Special Ed Advocate, the free online newsletter from Wrightslaw.com. Subscribe or learn more by clicking here. (Read More...)
SAY: The Stuttering Association for the Young is a national non-profit organization that empowers, educates, and supports young people who stutter and the world that surrounds them. (Read More...)
Girl Power 2 Cure - Rett University is a 501(c)(3) organization chartered to raise funding to support: 1. Rett Syndrome treatment and curative research 2. General family resource and emotional support of children/families affected by Rett Syndrome 3. Educational programs for disabled and non-verbal children suffering from Rett Syndrome and other debilitating neurological conditions (Downs Syndrome, CP, Angelman Syndrome, Autism, etc.) which limit their ability to communicate, read, and write in traditional classroom settings (includes teacher and professional training/seminars for therapists and other specialists targeting services to complex-needs individuals). Note: Rett Syndrome is a debilitating neurological condition which predominantly affects females, robbing them of the ability to speak, walk, or use their hands. It is caused by a random genetic mutation on the X-chromosome. 1 in 10,000 girls are affected, without regard to race, origin or any other common factor. (Read More...)
Since its founding in 1986, the National Educational Association of Disabled Students (NEADS), has had the mandate to support full access to education and employment for post-secondary students and graduates with disabilities across Canada. NEADS is a consumer-controlled, cross-disability charitable organization (corporation # 1007761975RR0001). We represent our constituents through specific projects, resources, research, publications and partnerships. NEADS is governed by a national Board of Directors representative of all of the provinces and territories. Our work as an organization focuses on three core Strategic Program areas: Student debt reduction Student experience in class and on campus Student and graduate employment The organization functions collaboratively with post-secondary stakeholders, other non-governmental organizations, employers, disability service providers (on college and university campuses) and communities that can improve opportunities in higher education and the labour market for persons with disabilities in Canada. NEADS also provides ongoing expert advice to Employment and Social Development Canada and provincial/territorial governments. We have been a stakeholder group of the Government of Canada's National Advisory Group on Student Financial Assistance -- Chaired by the Director General of the Canada Student Loans Program -- since 1987. Our work includes promoting government programs and services that support higher education for Canadians with disabilities. The Association is a member organization of the Council of Canadians With Disabilities (CCD). (Read More...)
The U.S. Pain Foundation is the leading advocacy organization for people with pain. Its mission is to empower, educate, connect, and advocate for individuals living with chronic illness that causes pain, as well as their caregivers and clinicians. Through multiple programs and services, the U.S. Pain Foundation works to enhance the quality of life for people with pain, improve patient outcomes, address access and affordability issues, and increase public awareness and empathy for the issue of pain. The U.S. Pain Foundation is an independent nonprofit 501(c)(3) organization. (Read More...)