Orlando family impacted by ALS asks for support


Pioneer Founding member
Ann Keil, Reporter

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ORLANDO, Fla. (WOFL FOX 35 ORLANDO) - An Orlando family impacted by ALS is spreading awareness about the need, not only for research, but also assistance to families impacted by the incurable disease today who are being bankrupted by it.

"We tried to do it all by ourselves until we realized that the atrophy and the muscles were just deteriorating. What do we do now? Are we just going to sit back, and get busy dying? We're getting busy living," said Walter Briggs, a former NFL quarterback who dabbled in acting.

He is now a full-time caregiver for his wife, Debra. She was diagnosed with ALS, or Lou Gehrig's Disease, in September of 2012. Shortly thereafter, she left her position as a family case manager.

"It takes a lot out of her every day, every night to just survive," said Walter.

Debra founded Debra's Journey for Life Foundation, Inc. in December of 2013 with her husband.

"At the stage that I am, a lot of people are not even talking. A lot of people are on feeding tubes," said Debra.

So, she and her husband, who has since reached out to friends in football and acting, have been using their voices to spread awareness about the physical, emotional and financial impact of the debilitating, neurodegenerative disease.

"If I can be a voice to someone else's mother, father, sister, or brother that has Lou Gehrig's Disease, Debra's Journey For Life Foundation is going to lift them up, and let them know there is a source of help," said Walter.

"There is no selfishness to Debra at all. It involves her, but it's bigger than her," said Steve Pisarkiewicz, Debra's Journey For Life Foundation Board Chairman, who is also a former NFL player and leader of the local NFL player's association.

"The clock is running. Lets go," said Steve, about the couple's desire for public support so that they may travel abroad for a stem cell treatment. He also claims it is time to invest in finding treatments and a cure through research which is a top priority of the ALS Association that is behind last summer's ice bucket challenge.

The association has made an initial contribution of $21.7 million to expedite research to find treatments and a cure for the disease of the $115 million raised. A larger spending plan is reportedly still in the works.

While the association's Florida chapter has also been allocated funds that are being used for research and patient care, the Briggs said the costs of the disease for even one family are cumbersome.

They are now in the final stages of organizing a celebrity golf Tournament at Swiss Fairways Golf Course in Clermont on May 16, between 9 a.m. and 3 p.m. A reception has also been organized the night before between 7 and 11 p.m. at Pour House Bar and Grill in Metro West Orlando.

Her primary focus today is to raise $40,000 for a trip to Mexico for a stem cell treatment that is not legal in the United States. Walter said any additional monies raised during the golf tournament will go into an endowment for other impacted families that they have already reached out to.

"You have to do it on your own. You have to raise funds for yourselves," said Debra, who also plans to teach the families fundraising tools, like building their own foundations, believing it could help them survive financially. She also believes it would give them access to funds to pursue experimental, often costly treatments, a journey she is already on.

"Now, I feel like my back is more stable, and I have more energy," said Debra to her doctor about the impact she believes the last amniotic stem cell injection had on her body.

As part of her effort to teach others, she has opened her World up to FOX 35 and the public even during doctor's visits.

"Amniotic stem cells are basically the fluid that he baby floats in, and the membrane surrounding the baby," said Dr. James Ray, an Orthopedic Surgeon, who has injected Debra a handful of times. "They have the ability to repair as well as take care of pain and inflammation."

Doctor Ray, who is a believer in the treatment for improved quality of life, is still candid about the ongoing research into its true therapeutic potential. "What we do is inject, and we look for a positive effect."

The controversial alternative, that Debra believes may be more effective, has raised ethical issues. "In the U.S., you're not going to get fetal or embryotic stem cells," said Dr. Ray. So, Debra intends to take that trip to Mexico, that was mentioned above, to get it injected legally, if the Briggs are able to raise enough money to pay for the $40,000 trip.

"I know a lot of people don't agree with stem cell, but if they were in my shoes, I think they would think differently. I just can't sit around and be sad. There is too much to live for," said Debra.

"I wouldn't know what to do without her. She is my best friend," said Walter, about the risk they are taking. "I am her best friend, and she is mine, and there is nothing in the World that I wouldn't do for her, nothing."

For more information about getting involved in the Brigg's foundation or attending an upcoming fundraiser, more information is available on the foundation's website: http://www.debrasjourneyforlife.org/

FOX 35 also reached out to the ALS Association. An ALS Florida Chapter representative provided information about its efforts in respect to questions about their investments.

"At the Florida Chapter, we are investing the funds we received directly from donors from the Ice Bucket Challenge as follows:

We've increased direct dollars to patients in the form of grants for home modifications, vehicle modifications, durable medical equipment, assistive technology devices, communication equipment, respite care, and other financial needs.

We're developing new programs and services to help people living with ALS in the state of Florida that are transformational and seek to help patients in new ways or to serve patients we have previously not reached.

We're investing in our Chapter infrastructure such as fund development resources to be able to sustain new programs and services over many years, and not just in the short-term."

The ALS Association also provided this statement on stem cell research:

"The ALS Association's vision is to create a world without ALS. To that end The Association is committed to leaving no stone unturned in the quest to discover effective treatments and a cure for Lou Gehrig's Disease. The Association believes that stem cell research is an evolving field that holds the potential to provide benefit to people with ALS in the future. The pursuit of stem cell research with appropriate scientific review and ethical guidelines directly furthers the mission of The ALS Association in finding a cure for and improving living with ALS. The ALS Association primarily funds adult stem cell research. Donors may stipulate that their funds not be invested in any study using embryonic stem cells. Many labs have replaced embryotic stem cells with induced pluripotent stem cells. These IPS cells [induced pluripotent stem cells] begin as adult human skin cells but are then reprogrammed to become stem cells, which are then ready to become other cells types."