Addressing 3 major conditions often labeled Neuromuscular disease here. ALS, more commonly know as Lou Gehrig’s Disease. Muscular Dystrophy include a number of variant conditions. Parkinson Disease, most noted for tremor (a form of rhythmic shaking), stiffness or rigidity of the muscles, and slowness of movement. See here why the more accurate term Neurodegenerative diseases describes these conditions.
All three, and the variants of each, cause a downward spiral of progressive loss of function. Neurological loss causing debilitating loss of function is the common feature. The various causes are pursued relentlessly. Research efforts continues to seek anything offering the potential for prevention or cure. Significant progress continues and hope springs eternal.
These organizations provide support, offer information and promote research. They are great sources of news. Perhaps their greatest service is they continue to give people hope.
ALS
[otw_shortcode_content_toggle title=”ALS Association” opened=”closed”]The ALS Association, established in 1985, is the only national non-profit fighting Lou Gehrig’s Disease on every front. Leading the fight to treat and cure ALS through global research and nationwide advocacy. Empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
Our nationwide network of chapters provides:
- Comprehensive patient services and support to the ALS community,
- Coordinates multidisciplinary care through certified clinical care centers,
- Fosters government partnerships.
The ALS Association leads the way in research, care services, public education, and public policy, builds hope and enhances quality of life while aggressively searching for new treatments and a cure for neurodegenerative diseases.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”ALS Foundation for Life” opened=”closed”]Optimism abounds at the ALS Foundation for Life for the day when a cure or prevention for ALS is discovered. Equally we are aware we cannot sit idly waiting for scientific research on neurodegenerative diseases and FDA approvals. Our goal is to raise public awareness and help improve the quality of life for the men and women in our community who are who are battling this disease on a daily basis.
We are committed to providing funding for medical equipment, home modifications, and technological devices allowing patients some independence and sense of dignity. It is on us to do whatever we can to ease the physical, emotional, and financial burdens that accompany this diagnosis. To reach out into the ALS community to offer assistance and make an impact on the lives of patients and their families.
[/otw_shortcode_content_toggle]Muscular Dystrophy
[otw_shortcode_content_toggle title=”Cure CMD” opened=”closed”]Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. Cure CMD was founded in 2008 by three parents whose children were affected by Congenital Muscular Dystrophy. Through close collaboration with scientists, doctors, dedicated volunteers, involved families, and generous donors, Cure CMD has achieved significant impact in its first decade as a nonprofit organization.
Cure CMD aims to advance all five out of five CMD subtypes to clinical trial by 2025. We will improve the lives of those living with CMD through engagement and support of our community.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”FSH Society” opened=”closed”]The world’s largest grassroots network of Facioscapulohumeral muscular dystrophy, or FSHD. Patients, families and research activists, are helped by the FSH Society through:
- Education and outreach;
- Funding for scientific and medical research;
- Advocates for increased government and industry investment in FSHD.
As long as we are here, no patient need ever face this disease alone. With generous donations from patients, families, friends, major donors, and sponsors, the FSH Society will keep working to accelerate research leading to treatments.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Myotonic Dystrophy Foundation – MDF” opened=”closed”]The Myotonic Dystrophy Foundation (MDF) is the world’s largest patient organization focused solely on myotonic dystrophy. Our mission, “Care and a Cure,” is about enhancing the quality of life of people with myotonic dystrophy (DM), advancing research focused on treatments and finding a cure. We strive to raise visibility of myotonic dystrophy and people living with DM with key stakeholders in Congress, federal and state agencies, medical professionals, and the media.
MDF provides emotional support, education and resources to affected individuals and their families. We conduct outreach to raise awareness about DM in the medical community and the general population. Remain committed to advancing research and therapies. Advocate for legislation, research, and infrastructure initiatives that will advances our understanding of myotonic dystrophy, accelerates drug development, and improves diagnosis and care.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Muscular Dystrophy Association – MDA” opened=”closed”]MDA is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS, related muscle-debilitating and neurodegenerative diseases. Neurodegenerative diseases take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger. Finding research breakthroughs across diseases, caring for individuals from day one and empowering families with services and support in hometowns across America.
At MDA, we take a big-picture perspective across the full spectrum of neuromuscular and neurodegenerative diseases to uncover breakthroughs that accelerate treatments and cures. The power in our research approach is applying learnings from one disease often achieves progress in others. Thus bringing urgently needed answers to our families.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Muscular Dystrophy Family Foundation – MDFF” opened=”closed”]MDFF is proud of its long history. Since 1958, MDFF has continuously provided financial assistance, quality programs and services for the Muscular Dystrophy community. MDFF focuses 100% on providing adaptive equipment and direct support services to individuals and family members in the U.S. affected by a neuromuscular disease.
Direct support services includes children’s and adult’s medical clinics, emotional support, annual social events and other equipment and services. Helping so that those with muscular dystrophy may enjoy greater mobility and independence.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Parent Project Muscular Dystrophy / End Duchenne” opened=”closed”]Parent Project Muscular Dystrophy’s mission is to end Duchenne.
- We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.
- Supporting research to identify and fund the most promising Duchenne research and therapies; Stimulate new research; Encourage the pharmaceutical industry to invest in Duchenne.
- Advocate for policies to improve the lives of families and the needs of the whole Duchenne community; Work with the NIH and other agencies to keep Duchenne research a high priority among the study of neurodegenerative diseases.
- Identify gaps and solutions in care for young men across the globe with Duchenne and ensure all Duchenne patients have access to optimal health care.
- Provide a supportive environment in which people affected by Duchenne can share needs, concerns, and common experiences.
- And educate to raise awareness, promote early diagnosis, provide educational materials and share information about neurodegenerative diseases treatment and care options with the global Duchenne community.
Parkinson Disease
[otw_shortcode_content_toggle title=”The American Parkinson Disease Association – APDA” opened=”closed”]The American Parkinson Disease Association (APDA) was founded in 1961 to Ease the Burden – Find the Cure for Parkinson’s disease. APDA has raised and invested more than $89 million in patient services and education. We continue to be a funding partner in most of the major Parkinson’s disease scientific breakthroughs.
APDA’s energy is focused on:
- Research, more than $45 million to scientific research and has been a funding partner in most of the major PD scientific breakthroughs;
- Patient Services, more than $44 million funded;
- Education and Public Awareness.
Funding includes 8 Centers for Advanced Research, and grants for the most promising research toward discovering the cause(s) and finding the cure for Parkinson’s .
We also support of a national network of chapters, Information and Referral (I&R) Centers, and support groups that provide programs, services, and resources to facilitate a better quality of life for the Parkinson’s community.
It is our grassroots structure that distinguishes APDA from other organizations serving people with Parkinson’s disease.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”The Michael J Fox Foundation” opened=”closed”]The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease . Our aggressively funded research agenda and dedication to ensuring the development of improved therapies for the neurodegenerative diseases effect benefit those living with Parkinson’s today.
Our Core Values
We are 100% patient-focused.
Our team works tirelessly every day with one urgent goal in mind: Accelerating breakthroughs patients can feel in their everyday lives. We strive to make progress in the following key areas by evaluating risk, opportunities, and challenges through a patient-focused lens:
- Speed up treatments that can slow, stop or reverse the progression of Parkinson’s disease
- Speedier treatments for the currently unaddressed or under-addressed symptoms of Parkinson’s disease
- Speed the development of treatments to address or avoid the debilitating side effects of current Parkinson’s disease drugs
We are obsessed with efficiency.
Operating with a focused sense of optimistic urgency, we look to find a cure for Parkinson’s. At the same time ensuring the development of improved therapies for people living with Parkinson’s today. We won’t stop until a cure is found. We’re on it.
We won’t stop until a cure is found.
We take pride in all our accomplishments so far. But ultimately we have only one definition of success: Scientific solutions that produce tangible improvements in patients’ lives.
We are risk-takers and problem-solvers.
From inception, MJFF has invested in high-risk, high-reward research targets. An approach that in 10 short years has transformed the broader approach in the PD research field for neurodegenerative diseases.
Our model is different.
Accepted practice among private disease research funders that the most important decisions — how to allocate donor-raised dollars — are made by external scientific advisors and boards. We bucked this model from day one in favor of building an in-house team of formally trained PhDs and business-trained project managers.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”National Parkinson Foundation” opened=”closed”]At the National Parkinson Foundation, we make life better for people with Parkinson’s through expert care and research. Everything we do helps people actively enjoy life with their friends, families, children and grandchildren until there is a tomorrow without Parkinson’s.
6 Core Values Guides The National Parkinson Foundation:
Community: Relationships matter. NPF recognizes how we depend on one another to advance our mission. The active involvement and dedication of our community drives everything we do.
Compassion: We believe in giving from the heart. Going above and beyond is central to our commitment to support and grow our caring community so that no one has to face neurodegenerative diseases like Parkinson’s alone.
Education: Knowledge is a valuable asset. Providing people with the best available information, tools and resources to manage their unique symptoms is vital. Ensuring people get the best possible care at every stage of Parkinson’s.
Empowerment: We believe people have power over Parkinson’s. All of our programs empower people to focus on what they can do right now to live their best possible life.
Integrity: We believe in demonstrating professional, financial and ethical standards of excellence. We hold ourselves and our performance accountable to our mission, to our donors, to our board, to our partners and to our community.
Impact: We believe in better. We are committed to quality research and programs and to connecting patients and families to life-changing services.
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