Latest Research News

Bringing HOPE to the Chippewa Valley since 1992.

Greetings!

Having worked with PALS and their families over the past 25 years, I often wonder why the researchers haven't yet found a cure. I doubt there is anyone that can adequately answer that question, but this is what I do know - in 2018 there are more people diligently searching for answers than ever before.

THERE IS HOPE!

At our next monthly meeting on February 8th at 1 p.m. Joellen Finch RN, BSN coming to talk about Radicava (Edaravone), a prescription medicine, recently approved by the FDA to treat people with ALS. Joellen is a Clinical Educator for VMS Bio-Marketing. This presentation will review a lot of information

about Radicava and answer questions such as...What is it? Are there risks? Can I afford it? Will it cure me of ALS? Is it in pill form? Do I have to take it for the rest of my life? Join us to find out these answers and much more about Radicava. The meeting is at the Chippewa Valley Bible Church, 531 E. South Ave. Chippewa Falls, WI. Park in the north parking lot, we will be right inside the door.

Our newsletter today will give you just a glimpse of what is happening in the research field.

Information on various agencies and a few ALS research programs can be seen below:

National ALS Association

The Mission of ALSA is to discover treatments and a cure for ALS. With the world’s largest ALS research program, The ALS Association is active in more than 150 labs around the globe. Check out their website to see the latest projects and work being done.

ALSA W ebsite

ALS Worldwide Website says this about their research efforts.

ALS Worldwide funds, facilitates and shares groundbreaking research. This search focuses on understanding the causes, stopping progression, and seeking a cure. There are now as many as 100 genetic permutations known to affect ALS/MND and related diseases. Researchers, clinicians, scientists and neurologists remain totally committed. In the past five years, efforts have grown tenfold. Being clear about what hasn’t succeeded is as important as identifying effective relief. Breakthrough therapies, current human trials and future directions all offer hope.

ALS Worldwide Website

As one of the neuromuscular diseases supported by the Muscular Dystrophy Association , MDA provides funding for many ALS Research projects.

Check out their website for more information on the projects they are currently funding.

MDA Website

Packard Research Projects include:

150 Scientists

27 Projects

18 Institutions

5 Countries

Working together to find a cure.

Packard Center Website

Here is how The ALS Therapy Development Institute says they do it:

"Our innovative science and cutting edge approach have resulted in the identification of AT-1501 , a promising treatment for ALS. We also pioneered the ALS Precision Medicine Program , the world's premier program and partnership with ALS patients to discover additional potential treatments. "

ALS TDI Website

Can you help in 2018?

You may think you're too busy, or don't have any talents, or scared to try something new - believe me, we've all been there. But people with ALS can't wait - they need our help now. PLEASE CONSIDER what small part you can do to help lift the burden.

The Board of Directors of the ALS Support Group is asking for your help this year in the following ways:

Help with planning and or running the walk. Possible areas of need would include:
collecting items for the silent auction
finding corporate sponsors
set-up and take down on the day of the walk
organizing and executing activities for children during the walk
Would you consider becoming a Board Member for the NW Wis ALS Suppport Group, or can you recommend someone? Board members meet 3-4 times per year and make decisions concerning fund raising, staffing and allocation of funds and maintaining our Not-For-Profit Status. Call or email us and our Board President can tell you more of what the position entails.

If you would be able to help in any of the activities listed above, or have an idea of someone who might, or even if you just want to find out more, please email us by clicking this link.

Please consider starting the year with a generous donation to help in the fight against ALS.

In preparing for this newsletter I decided to check out the Charity Navigator, a website that evaluates charities to help donors know who they are giving to. I did a simple search for charities related to ALS thinking I might be able to make a list of the agencies for you. WRONG! My scroll to the bottom of page one said I was viewing 20 of 1000 agencies! Check out Charity Navigator for yourself.

Any monies donated to the Northwest ALS Support Group are used to directly support ALS patients and their families living in northern Wisconsin. Our support includes personal caring and sharing along with monthly support group meetings, individual home visits, equipment lending, phone support, as well as occasional grants for unmet financial needs.

Sincerely,

Sally Sweet

NW WI ALS Support Group

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