The Ice Bucket Challenge raised money and consciousness about ALS, also known as MND (motor neuron disease). Let’s hope the money will help researchers unlock the secrets of ALS, one of a family of neurologically-based illnesses that we would all be happy to consign to the dustbin of “formerly lethal diseases.”
If you’re curious about how your Ice Bucket Challenge money might be spent, have a look at six centers that are trying to make the breakthroughs those with the disease so badly need. These are legitimate research centers doing clinically validated trials or providing info on where to find such trials.
There are some quack operations out there, places to spend a lot of money for zero result. If anyone is thinking about seeking out one of these treatments, please have a look at the link on the MDNA, Great Britain website. It talks about alternative treatments and clinics that claim to cure the disease or slow its progress. Other national centers also provide info on clinical trials.
ALS TDI (ALS Therapy Development Institute)
Nonprofit organization funded and run by ALS families. Located on Boston, MA. Specializes in fundraising events and in a variety of therapeutic approaches based on genomics and biomarkers. Here’s their web page listing various clinical trials. http://tinyurl.com/nvmxao6
ALS SLA Canada
Canadian organization that coordinates fundraising for research and that provides info for Canadians and their families. For clinical trials in Canada, go here. http://tinyurl.com/l29u2vr They also link to the Canadian Neuromuscular Disease Registry (CNDR), a means by which researchers can connect with ALS patients and their families in order to better understand various aspects of the disease. Their website has a valuable overview of the various research initiatives underway to try to find what causes the disease. http://tinyurl.com/nreyyrt They also have a page that lists the top Canadian ALS researchers.
MNDA (Motor Neuron Disease Association) Great Britain
One discovery I made on their website is a link that talks about unproven treatments. This is such an important topic, and I haven’t seen anyone else address it directly.http://tinyurl.com/jwhksu8 Perhaps they’re attempting to alert the public because there are unlicensed clinics in Great Britain claiming that they can reverse the disease progression by injecting folks with stem cells. The MDNA has fact sheets about how to tell the difference between licensed and unlicensed clinics and issues to think about if you’re seeking alternative treatments, none of which have been clinically verified.
Australia’s MND Ice Bucket Challenge raised $2 million, and that’s going to be a great benefit for researchers down under. Though Australia is a bit off the beaten path for North Americans and Europeans, their website has a page that links to research news both within Australia and in the US, UK, and Canada, and that’s of great value. http://tinyurl.com/phax4fj They have links to various clinical trials going on in Australia and New Zealand. This link is good for other diseases besides ALS/MND.http://tinyurl.com/qxlbr32
ALSA’s Research Arm: NEALS (Northeaset Amyotrophic Lateral Sclerosis Consortium)
For those newly diagnosed with ALS, a good place to look for research trials that match with your type of ALS (familial, sporadic, and other types) a great place to look for research trials is here.http://www.alsconsortium.org/search.php What’s good about this site is that it shows which trials are actively recruiting participants and which are closed, but may be open by invitation only.
Check the webinars page for real-time events about treatments like the Diaphragm Pacing System and Q & A’s about clinical trials. These webinars are terrific. I listen in whenever I can. They allow anyone to ask questions about late-breaking news and research. Past talks are archived.
RMN (Research Motor Neurone) Ireland
Researchers at Trinity College, Dublin are actively involved in finding a cure for ALS and in supporting families struck by the disease. In an inaugural lecture for the new neurology institute, Professor Orla Hardiman said that Ireland provides a unique research opportunity to study the role of genetics and make comparisons with similar, but more genetically diverse populations, such as Cuba. Ireland also has been a leader in developing multidisciplinary treatment centers, a topic that was popular at last year’s ALS/MND conference in Milan. Read more here.http://tinyurl.com/kg8fn7y