Petition for GM6 drug that could help ALS patients.

The drug company, Genervon, a small biotech,  is doing the unheard of in ALS.  In early February, Genervon, is going to meet with the FDA to ask for accelerated approval for its drug, GM6,  for ALS.    This trial drug was tested on 8 ALS patients and it has helped, slowed or stopped their ALS progression!   PLUS, a ventilator patient (like Josh) who has had ALS for 9 years, took the low trial dose of GM6 --- and it has helped him with breathing, speech and swallowing!    We need your help (again)! There is an important petition on Change.org requesting Congress to support us in asking the FDA to approve this drug NOW.     It is very important to get the maximum number of signatures for maximum impact to influence and achieve drug acceleration and approval.   I am asking that you please take a moment to sign this Change.org petition asap (see below)-- and forward this to your contacts and share on your Facebook page - asking for as many signatures as possible. Also...please consider submitting  a request directly to the FDA (link below). This drug could possibly help Josh and all of our friends currently living with ALS.   If GM6 receives accelerated approval - it's the only drug close to having a chance of helping Josh and today's ALS patients.  Without accelerated approval of GM6 - today's ALS patients do not have any medication options to help them. How you can make a difference: 1. Go to https://www.change.org/p/food-and-drug-administration-preliminary-approval- of-genervon-gm6-for-use-in-als and sign the petition asking the FDA for conditional approval of GM6. 2. Go to http://www.accessdata.fda.gov/scripts/email/cder/comment.cfm and submit a comment to the FDA supporting conditional approval of Genervon GM6 for people with diagnosed ALS. 3. Write your congressperson and senator asking them to urge the FDA to grant conditional approval. 4. Share this post on every social media you use. This message needs to go viral. Thank you so much (again),   Kathy Thompson

States are finally putting the Right To Try law in effect.

The "Right To Try" law allows terminally ill patients to obtain experimental drugs without getting federal approval. 

The Hopes & Dreams Quilt Challenge for ALS was started by Quilters Dream Batting owner, Kathy Thompson in efforts to raise awareness and funds for this awful disease. Kathy's son, Josh was diagnosed with ALS in 2007. After many promises from the FDA and much time spent working to get the necessary treatments, Josh was denied access to a possibly life saving medicine, crippling this young man's ability to live and hindering his quality of life. 

In the video below, Kathy shares her story. 

However, there may be a bright side for patients suffering from terminally ill diseases. 

So far, five states including Colorado and Louisiana have jumped on board and put the Right To Try law in effect! 

Goldwater Institute's  Senior political advisor, Lucy Caldwell, interviews with Fox News about how this law could save many lives. 

Like most things, this law has caused debates and controversy. What's your take? Hope your state passes the law if it already hasn't? Leave us a comment. 

GOOD NEWS about ALS Research!

Okay, I admit it.  I am not a brain surgeon.  I'm a former radio/TV reporter, public relations/communications director who now enjoys quilting, is an avid music & art lover, and a fan of any and everyone who likes helping other people.  I am blessed to coordinate the Hopes & Dreams Quilt Challenge for ALS and know that each quilt donated gives HOPE to our DREAMS of a CURE!

Quick recap for those who may just be learning about Hopes & Dreams.  It was created by Kathy Thompson and Juanita Kelly after their son/grandson was diagnosed with ALS.  The goals of the challenge are to give hope to a person living with ALS (affectionately known as a "PAL") by giving them the gift of a quilt, while also raising money through the sale of quilts for much needed ALS Research.

Thousands have embraced this challenge and in the first four years have given more than 3,300 quilts to a PAL, and have been a part of donating more than $80,000 to ALS Research.  And today, I am happy to say there is really good news on the ALS Research front.

Dr. Eva Feldman, MD, PhD

Meet Dr. Eva Feldman, MD, PhD, Director of the A. Alfred Taubman Medical Reserach Institute, Director of Research of the ALS Clinic at the University of Michigan Health System.  Dr. Feldman is soft spoken, compassionate and cares about people suffering with ALS.  Don't believe me, watch this video.

Dr. Feldman is the principle investigator for the Neuralstem Phase I Stem Cell Trial in ALS (Amyotrophic Lateral Sclerosis) know by most as Lou Gehrig's Disease.  What is that?  I think I'll let the brain surgeon explain.

The final results of this trial have been published in the peer-reviewed journal, "Annals of Neurology.  The Wall Street Journal printed the press release on the results which you can read here.  The release states, in part -

"In "Intraspinal Neural Stem Cell Transplantation in Amyotrophic Lateral Sclerosis: Phase I Trial Outcomes," results were updated from Phast I interim data, reported earlier, to include data from the last six patients in the trial.  These six patients were the first to receive cervical stem cell transplants.  Three of them were also the first to be transplanted along the length of their spines, in both the lumbar and the cervical regions.  The results showed that NSI-566 human spinal cord stem cells can be safely transplanted in both the lumbar and cervical spine cord segments, did not accelerate disease progression, and warrant further study on dosing and therapeutic efficacy.  Furthermore, the researchers were able to identify potential therapeutic windows, suggesting that more injections, as well as multiple injections, are better and may increase both the length and the magnitude of the potential benefits.  This is consistent with the hypothesized neuroprotective mechanism-of-action for this cell therapy."

I'm not a brain surgeon.  But what I read is, (1) there is a "safe" way to transplant neural stem cells into the lumbar and cervical spine cord segments (the surgery did not harm the ALS patients), (2) that the transplant "did not" cause any acceleration in the progression of ALS in the patients (the stem cells did not increase muscle weakness), and (3) the results showed improvements in patients and the results suggest that additional stem cell transplants may help continue to provide, 'preserved strength and preserved function' of muscles in ALS patients at Dr. Feldman referred to in the video above.

Phase II is now underway at the University of Michigan, as well as two additional sites - Emory University Hospital in Atlanta, Georgia and Massachusetts General Hospital in Boston, Massachusetts.

You need to know that Hopes & Dreams quilts have been given to some of these patients at the University of Michigan and we will most certainly share quilts with patients at Emory University Hospital and Massachusetts General Hospital.

Your time, talents and treasures are surely making a difference.  You are giving the gift of HOPE to OUR DREAMS of a CURE!

We will have more on this research in the days ahead.  Stay tuned.

Your Grateful Hopes & Dreams Coordinator