ADVOCACY & FUNDING
SOCIAL SECURITY BENEFITS
Social Security pays for disability benefits if "you have worked long enough and have a medical condition that has prevented you from working or is expected to prevent you from working for at least 12 months or end in death" (Social Security, 2014). For individuals disabled before age 22, the child "may be eligible for child's benefits" as long as they meet "the definition of disability for adults" (Social Security, 2014). The Social Security Benefits website can help you figure out what you or your child are guaranteed by law due to disability.
ADVOCACY
The Marfan Foundation provides an extensive guide for advocating specifically for Marfan syndrome. This guide provides ways for those interested to get involved, whether you are an educator or someone affected directly by Marfan syndrome. The guide can be found here. The nature of the diagnosis of the syndrome makes it something that is not widely advocated for, but the guide provided by the Marfan Foundation has helped to make great strides in securing funding and helping with further advocation.
For local (Maryland) advocacy services and programs, the Maryland Disability Law Center provides advocacy service plans that include advocacy for children's mental health, adult mental health, developmental disabilities, education, nursing facilities, traumatic brain injury, assistive technology, civil rights & community inclusion, voting rights, medicaid, advocacy for social security beneficiaries, and public policy (Maryland Disability Law Center, 2014).
Maryland Volunteer Lawyers Service (MVLS) - "Maryland Volunteer Lawyers Service is a nonprofit organization that connects low-income Marylanders in need of civil legal assistance with pro bono attorneys" (Maryland Learning Links, 2014).
Pro Bono Resource Center of Maryland - "Pro Bono Resource Center of Maryland is the statewide coordinator of volunteer legal services in a wide range of areas, such as housing, family law, education, disability, and many more" (Maryland Learning Links, 2014).
Pro Bono Resource Center of Maryland - "Pro Bono Resource Center of Maryland is the statewide coordinator of volunteer legal services in a wide range of areas, such as housing, family law, education, disability, and many more" (Maryland Learning Links, 2014).
Maryland Learning Links has collected a small group of organizations that legally advocate for individuals with disabilities. Follow the link for the list of local groups, which are organized by county and name of group.
FUNDRAISING & RAISING AWARENESS
The Marfan Foundation has taken great strides in providing outlets and opportunities for fundraising and raising awareness for Marfan syndrome. On their website, they have provided several project guides that make it easy for volunteers and interested parties to raise awareness and funding for Marfan syndrome and related disorders. Some of these project guides include:
Raising Awareness:
Adopt-a-School - The Adopt-A-School Project aims to raise awareness in schools "among teachers, principals, coaches, school nurses, other faculty and staff, students and their families" in order to help diagnose "children who have Marfan syndrome so they can get the care they need" (The Marfan Foundation, 2014). The project guide employs volunteers to select a school, hold staff meetings and run other events to raise awareness in that specific school.
Medical Office Awareness - The Medical Office Awareness Project aims to raise awareness in medical offices that may not have information available about Marfan syndrome. This could be local doctor's offices, free clinics, or hospitals, among other places; the idea is to get information out there so that it is available to everyone. The Marfan Foundation has provided a nice project guide that helps with raising awareness specifically in medical offices.
Fundraising:
Dine for Dollars - Dine for Dollars is a fundraising event that can be organized by volunteers and a local dining establishment. The Marfan Foundation has created a project guide that explains how to go about setting up a Dine for Dollars fundraising event, so that you or other volunteers can help to raise money for research and awareness of Marfan syndrome and related disorders. The project guide itself provides tips and suggestions for securing a location for the event, and how to properly advertise and generate hype so that the event is well populated.
Team Victory - The Marfan Foundation has created an endurance program entitled Team Victory that focuses on marathons and relay races to raise funds for Marfan syndrome and related disorder research. Individuals raise funds by participating in various marathons and bike tours around the United States.
FirstGiving.com - FirstGiving is a fundraising website used by several different organizations to raise funds for various things. While the page is no longer accepting donations, the Marfan Foundation ran a $15,000 fundraiser on this website, and received $32,370 in donations. FirstGiving is an excellent option for those looking to start a fundraising project of their own for Marfan syndrome.
(The Marfan Foundation, 2014).
Images used on this page were retrieved from:
http://www.marfan.org
http://www.mdlclaw.org
http://www.marylandlearninglinks.org
http://www.marfan.org
http://www.mdlclaw.org
http://www.marylandlearninglinks.org