Hope to those with ALS

[ineedmyelin]

By Ted Harada

I have a lot to live for: a beautiful family, friends and a life I love. Until a few short years ago, I also had hope.


All that changed in an instant. My future, my career, my hope of watching my three children grow up, attending their graduations, walking my daughters down the aisle, holding my grandchildren and growing old with my wife — all of that disappeared with two short sentences: “I’m sorry, you have ALS. There is no cure.”

In 2010, I was diagnosed with ALS, or Lou Gehrig’s disease. I was 38. My left leg fatigued easily. I was short of breath, my energy tapped. I needed a cane to walk. Then came the barrage of tests, the results the same: There is no hope. You are without hope.

Then I heard about a clinical trial transplanting neural stem cells into the spinal cords of ALS patients. It was the first of its kind. The Food and Drug Administration approved it and I qualified. I was treated at Emory University Hospital in March 2011.

Since then, the deterioration from ALS has temporarily slowed. I even completed a 2 1/2-mile walk to defeat ALS. What a change. This is real progress. I have hope again. But it’s not enough. We need to have hope for everyone.



I am doing everything I can to focus research on a cure for ALS and other diseases. I have become a speaker, finding a new voice as my leg strength returned. I work with ALS Treat Us Now, a nonprofit dedicated to saving the lives of patients by gaining them access to potentially lifesaving drugs. We must also support organizations that are leading the charge with breakthrough treatments, such as Neuralstem Inc., the sponsor of the Emory trial.

And that’s not enough.

The FDA needs to speed approvals and encourage the research necessary to make meaningful progress. Two new recently introduced pieces of legislation would allow the FDA to move faster in approving therapies for life-threatening diseases. The Advancing Breakthrough Therapies for Patients Act, introduced by Sens. Michael Bennet (D-Colo.), Orrin Hatch (R-Utah) and Richard Burr (R-N.C.), and the Transforming the Regulatory Environment to Accelerate Access to Treatments (TREAT) Act, introduced by Sen. Kay Hagan (D-N.C.), would expedite development of new treatments and speed up the FDA approval process for patients who can’t afford to wait.

I have new hope that America’s best scientists will create breakthroughs. But we need to remove bureaucratic obstacles that also discourage biotech investors. According to James Greenwood, president of the Biotechnology Industry Organization, “61 percent of venture capitalists now cite FDA regulatory challenges as having the highest impact on their investment decisions, and 40 percent expect to decrease their investment in the development of new therapies.”

Hope is something that is meant to be shared. Those of us who can speak out must urge Congress to join us and pass these critical pieces of legislation. Hope is out there. We just need to make it real.

Ted Harada, a former manager for FedEx and DHL, is on the board of directors of the Georgia ALS Association. He lives in McDonough.

http://investorstemcell.com/stem-cel...hose-with-als/

[Sue Pendleton]

Ted,
Great news for you! If you want to really spread the news and get funding and cut development time, you'll need help. Are there any bills in either the House or Senate right now? If so, we need the numbers and the names of the bill/s. Then write up a quick description of each bill and what letter writers need to say and who needs to be targetted in Congress. Last, post your request for support under Politics Forum. It will spread. Do remove the signature link when you post in Politics. Occasionally things get added to letters you don't want pasted in.

Sue

[SCI-Nurse]

Dear Ted

I work with many patients with ALS. Emory University is probably at the cutting edge of research for ALS in the US. This week is ALS Advocacy week on Capitol Hill and I sit on the board of directors for my local ALS chapter. With Congress cutting the budget, they have not cut spending for ALS research luckily. Some of that may have to do with the fact that so many people diagnosed with ALS are veterans.

You are a true hero and advocate, keep up the good work and I am glad you are seeing some results to your treatments. Keep us posted.

pbr

[fulltree]

I was "mistakenly" diagnosed back in 05 with ALS and it rocked my world, in the end it turned out to be multiple diseases appearing at the same time,that Doctors i am told would 9 out of 10 times misdiagnose as ALS because one is rare and the other i am supposedly the first American to have it,and the chances of someone else having both of these diseases is 1 in 9 billion, so i remain affiliated with the MDA/ALS and still cry when just typing those letters because as Ted said all hope gets sucked out of you,and even after they change the diagnosis you wonder what if they where right the first time?? how much time do i have?? it is totally a wrecking ball that comes through your life. And just to make things interesting my "new" diagnosis the Doctors tell me "There is no treatment, There is no cure, Tou will die from this or something caused by this" so either way, i am going to die prematurely . why i just told everyone this i do not know other than i hate ALS and a cure can not come fast enough for me.

[SCI-Nurse]

ALS and other motor neuron diseases have confusing presentations and sadly misdiagnoses occur. Your journey has been difficult I am so sorry. I hope you get some support to help you maneuver this new diagnosis. If you are unhappy with the support you are receiving from your current neurologist, I would seek a second opinion.

pbr