New Progress Against ALS

Seventy Years After Gehrig's Famous Speech, the Fight Against ALS Continues

(CBS)  Lou Gehrig might have considered himself lucky. But he couldn't have imagined that seven decades after his emotional farewell, there would still be no treatment for ALS.

"When I was initially diagnosed, the doctors, three different doctors, told me the same thing: 'There's nothing we can do. Go home and die,' basically," said Philip Carlo, an ALS patient.

But CBS Evening News Anchor Katie Couric reports that science may finally be making the kind of progress that would have made the iron horse proud.

"Much as those Yankees featured some of the greatest teamwork in the history of baseball. We have assembled a dream team of scientists and clinicians to work on the problem," said Valerie Estess, co-founder, Project ALS.

Once competitors, researchers from both Harvard and Columbia are working together - with skin samples from both patients and healthy donors to better understand what causes this disease.

"Well, for the first time we can now have billions of these cells to study in the laboratory and ask why it is that they get sick," says Dr. Kevin Eggan of the Harvard Stem Cell Institute.

For more about Project ALS click here
For more about MLB and ALS click here

In ALS, nerve cells - called motor neurons - become incapable of sending messages from the brain, to the spinal cord, and on to the muscles - resulting in paralysis and ultimately death.

"You're alive. But you watch yourself die, and you can't do anything about it," said Carlo.

Rather than retrieving the motor neurons from the spinal cord of patients, a procedure that's far too risky, scientists are creating them from scratch.

"Skin cells are very accessible, but they have nothing to do with the disease. So that's why we've had to find out a way of turning the skin cells into motor neurons," said Chris Henderson, Do-Director, Motor Neuron Center, Columbia University.

Couric decided to donate some of her skin to science.

A tiny piece of skin is put it in a Petri dish, where cells then multiply. They are genetically modified to behave like embryonic stem cells - capable of becoming any kind of cell in the body.

"They have all of the characteristics of embryonic stem cells but they don't come from the embryo," said Dr. Eggan.

They're then able to manipulate those very malleable stem cells to become motor neurons - enabling researchers to do what's never been done before: study the progression of ALS under a microscope.

"We want to compare the motor neurons from ALS patients with the motor neurons from healthy individuals. And through that we really do believe that we'll come to a fundamental understanding of what leads to ALS," said Henderson

Which in turn, should help them develop a treatment for the disease.

Carlo said the research is essential, "we have light at the end of the tunnel. And that -you can't ask for more than hope."

Hope, that even the luckiest man on the face of the earth never had.

At the end of his speech, Gehrig said, "I might have been given a bad break, but I've got an awful lot to live for. Thank you."

[jenpais]

My mother passed away April 22, 2009 after battling ALS for 3 years. It was a hard time for our family and changing our routines to being caregivers. This disease brings out a persons true character and proves how much they fight for their lives EVERYDAY!.. It a terrible disease and takes over the body functions. I hope a cure is found SOON to help others and remember the loved ones who fought HARD.

[sandrabrat]

Dear Katie,

Thank you so much for doing this special. I read the book of Jennifer Estes story, it was very heartwarming and sad at the same time.
My friend just lost his battle with ALS on the 4th of July, thankfully he went in his sleep. It is very hard to watch him die. My daughter has this horrific disease and she is 44 years of age. She was diagnosed last October but it affected her muscles. I would like to donate to the skin cell research if possible. I need to help in any way I can.
Thank you
Sandy

[DrCSwartz]

Katie,

I hope you and your colleagues read these comments and appreciate how deeply ALS affects the lives of the patients and their entire family. My sister's husband died ofALS in 2001.

Shame on you all for teasing watchers for several days before airing the story. These popeple have enough trouble in their lives without being strung along by you and your network. This research is far from the cure that your teasers suggested.

Be kinder. These people need it more than you can imagine.

[sjustice1969]

My husband died from ALS on July 21, 2006. It is a horrible disease and took him from me and the world way too soon. While he was living with the disease, he wrote what he called his "ALS Adventures." I would recommend that anyone that is related to, associated with or caretaker for read his adventures. He was quite the humorous writer. You can find the ALS Adventures at http://www.mikejusticefund.org/ALSadventures.asp
Thanks Katie for the story!

[macdonas]

Thank you. Did they diagnose your husband with ALS right away? Or did they think it was something else first?

[JohnC1111]

My mother started having symptoms of slurred speech 2 1/2yrs ago. After a year of visiting many doctors/specialists she was diagnosed with ALS. Since then she has lost the ability to speak, eat, or use her arms. She continues to battle this horrible disease each and every day. Thank you to Katie Couric and CBS News for airing report. ALS doesnt get nearly the media attention of other diseases like cancer or AIDS.

Thanks again.
John

[pattydog]

Dear Katie, Thank you from the bottom of my heart for raising awareness of ALS. I have been fighting this disease for the past 6 years and it truly is a "heartbreaker" not only for myself but for all you love me. We need more programs like your's to help fund research to slow down the progression of this horrific disease and then to have the time to find the cure.

Thank for helping us to do this.

Kathy

[pattydog]

Dear Katie, Thank you from the bottom of my heart for raising awareness of ALS. I have been fighting this disease for the past 6 years and it truly is a "heartbreaker" not only for myself but for all you love me. We need more programs like your's to help fund research to slow down the progression of this horrific disease and then to have the time to find the cure.

Thank for helping us to do this.

Kathy

[garyaiello]

Dear Katie,thank you so much for bringing this horrific disease to the attention of the world.i am a 59 yo man from north Jersey with ALS.we so need help from this death sentence,not only for the PALS but for our families who watch us deteriorate.you have a youg lady on your staff,her name is Sam,she is friends with my son,you autographed a picture for my son,'Gary Good luck at Merriil Lynch'.thank you for your kindness.please dont give up on us,time runs out everyday for us.
God Bless you Katie,gary aiello

[rosaliecarr]

Dear Katie,
Thank you for your story on hope for ALS patients. My husband died at 34 years old after an eight year battle with ALS. He has been gone for 19 years and I still am hoping for a cure. Your story brought tears to my eyes and gave me a quiet moment to think about how lucky I was to have been loved by such a brave, courageous man. For all ALS patients I continue to have hope and prayers. Thank you, thank you.

[LRESA500]

I am a resident physician in Virginia considering a career in Neurology. I believe we will have decent treatments for ALS within the next 2 decades that will greatly improve the quality of life... Hopefully sooner.Unfortunately I think a cure is several decades away probably in the latter part of this century. To the patients of today...never give up hope. Your body has lost its ability to do something properly and science needs to discover how to restore it. In theory that should be a lot "easier" than treating a condition aquired in the womb that presents itself at birth.

[arsm2]

I HAVE BEEN DIAGNOSED WITH ALS...I'M IN MY 70'S AND IT'S BEEN SLOW PROGRESSING OVER THE PAST FIVE YEARS, AND NO ONE KNEW WHAT IT WAS UNTIL RECENTLY WHEN IT STARTED AFFECTING MY LEGS...I'VE LOST THE USE OF MY LEFT HAND AND ARM...I'M ON A FOOD SUPPLEMENT CALLED LUTIMAX, PLEASE GO TO LUTIMAX.COM AND READ ABOUT IT...ALSO, I'M TRYING MIRCO CURRENTS TO STIMULAYE THESE NEURONS...I'VE ONLY BEEN USING THIS FOR A COUPLE OF MONTHS, BUT IT'S GIVEN ME SOME HOPE...LET'S ALL PRAY THERE'S SOMETHING MORE OUT THERE FOR US...KEEP THINKING POSITIVE...

[pennyabreo]

Thank you very much for airing the segment on ALS. I am a 42 year old wife, mother of 2, who has been diagnosed with ALS 18 months ago. I am still able to do many things independently, including working as a teacher. Your segment gives me faith and encouragement that researchers are working to better understand this fatal disease. I live each day to the fullest and "will never give up." Please continue to update this research for me and others with ALS....Anxiously,faithfully,waiting for a cure!!

[ladycdw1]

Make July 4th National ALS Awareness Day Petition
Source: www.petitiononline.com
Make July 4th National ALS Awareness Day Petition, hosted at PetitionOnline.com
On July 4th 1939 Lou Gehrig stood on the field at Yankee Stadium in front of a packed house and said goodbye to the game that he loved so much. The spotlight has never shone as brightly on ALS as it did with the passing of Lou Gehrig. This July 4th will mark the 70th anniversary of that historic day in baseball and it would be the perfect opportunity for fans of our great American pastime and for the MLB franchises to stand up together in a statement to ALS that we will NOT be defeated. We WILL find a cure. We WILL honor the memory of Lou Gehrig and everyone who has been touched by this terrible disease. The time is now and we CAN do something to make this happen.

[alstephenson]

My daughter was diagnosed in 2008, after countless visits to neurologists, with ALS. She is now 38 years old and has 4 year old twin boys. Katie, thank you for the report. There is not much attention given to ALS. I hope you continue to give updates on this terminal disease.

[maisherm]

Thank you Katie! both my mother and her sister died from ALS. My 6 siblings, cousins, and myself are all holding our breathe to see if it is a familia form of ALS.

[Smilinatu2]

Thank you so much for this report. It is very near and dear to my heart, as my mom and two uncles died from ALS. I am greatful for Project ALS and the work they are doing.

[Joanartstudio]

MY daughter was 29 when she died of ALS, last year, 2008. She lived barely a year after her diagnosis of ALS. She was young and healthy, when she had severe hip pain, which traveled down her right leg and out her foot. Her foot was paralyzed. She limped in/out of offices for 6 months, always to get the same treatment; bloodwork and and EMG. All nuerologists seem to do this very well, but thats about it. she had toBEGGED for a spinal tap, MRI, myleogram, more bloodwork, etc. Then she got pregnant. Within 2 months, she lost use of the right leg. By 4 months, she was dragging her legs on arm crutches. By 7 months pregnant, she was in a wheelchair, never to leave it again. She died when her baby girl was only 10 months old. NOT the normal story, not the normal age. ALS is thought to happen at an older age, but do some reserach, it happened. My duaghter had a life and a future. She is gone. THANK you for the story, dear Katie and please please don't let it drop here. Read about the Keri B. Still Conference on ALS we have begun to train caregivers and raise awareness, in N. C. at http://www.kerbstill.com PLEASE don't forget this report. please.

[alstephenson]

I'm so sorry about your daughter. My daughter turned 38 June 23. She has 4 year old twin boys. She was diagnosed in 2008 with ALS after countless visits to neurologists saying it could not be ALS because it was only affecting her right side. Finally, an EMG confirmed ALS. She still can walk, but is very unsteady and has a power chair she uses when she has to walk any distance. Again, I am so sorry for the loss of your daughter.

[Joanartstudio]

To alstephenson below, there IS no test for ALS thru an EMG or anything else. WHEN THEY CAN FIND NO OTHER reason to blame it on, its ALS. People wait for months to get into Mayo Clinic, but from a neurologist who worked there, they do not know anymore than anyone else. By the time they get in there, the disease has progressed, and they say its ALS.
Keri probably had bourielis (something like LYME, which also has no test to confirm it). Had it been recognized and treated, she would probably be here and free of all disease today. We face alot of ego in the medical field, because everything outside that world is quackery, their words, not mine. What Keri had, went undiagnosed, untreated, and it morphed into ALS. Its happening every day, I have no doubt.

[andysfamily]

Thank you so much for having something on a Disease which isn't notice very much. I lost my wonderful husband who died in August 2008. We had such a great support group during the 3 year battle with the disease but his courage was awesome. We have made so many new friends with or who have encountered it through there lives. Never really heard of the disease until we had it. How do we follow the research? Are they linked to the ALS Association at all? I am always sharing my husbands story with people because he was such a awesome man. Thanks again for having something on this disease. God bless

[tomydad1111]

hey any body out there that know where i can donate a peace of my skin please let me know i put a comment at the top but i want to this for every one that is suffering with this disease , thank you and god bless the hole world

[buffalogal19]

One of the most difficult things to face is watching the slow decline of a loved one suffering from this horrific disease. It claimed my mother's life at a young age. Thank you for airing this segment which gave me hope that a cure will finally be found.