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- The Prescription Drug User Fee Act
WASHINGTON-(Business Wire)-January 15, 2007 - The ALS Association today issued the following statement from Steve Gibson, vice president of government relations and public affairs, on the Food and Drug Administration's recommendations to reauthorize the Prescription Drug User Fee Act (PDUFA).
"The ALS Association welcomes the FDA's recommendations for reauthorizing the Prescription Drug User Fee Act. The agency has proposed important new initiatives and recommended increased funding levels in key areas that will benefit people with ALS (Lou Gehrig's disease) and help ensure that they have timely access to safe and effective medicines.
"While the recommendations call for additional resources to support FDA's drug safety programs, The ALS Association is particularly pleased that FDA also has proposed increased funding and new initiatives that will enhance the drug approval process and encourage new approaches to drug development.
"The proposal provides increased support for the Critical Path Initiative, an important program designed to streamline drug development. It facilitates partnerships between FDA, the public and industry that will promote new ideas to advance medical science. And it recognizes that the practice of medicine is not a one-size-fits-all proposition by examining new ways to assess the benefits and risks of medications that can save lives. Many of these initiatives were not included in prior versions of PDUFA, and we hope they will help provide new opportunities to bring ALS therapies from the lab to the bedside.
"As the debate on PDUFA reauthorization begins, it is important that Congress take action early this year to ensure the FDA has the resources to fulfill its mission and ensure patients have access to state-of-the-art, life-saving treatments. People with ALS have no time to wait.
"The ALS Association looks forward to working with Congress and the FDA to reauthorize PDUFA this year and improve patient safety by providing timely access to effective treatments."
The ALS Association is the only national not-for-profit health agency dedicated solely to the fight against Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig's disease. ALSA covers all the basesresearch, patient and community services, public education, and advocacyin providing help and hope to those facing the disease. The mission of The ALS Association is to find a cure for and improve living with amyotrophic lateral sclerosis.
- Family counts its blessings despite dad's disease
Special to The Miami Herald
BY JENNIFER COHEN
Every night when he came home from work, John Lore would get down on the floor and play with his sons, John Jr., 11, and Will, 9. He'd swing them in the air, carry them on his shoulders and bound around the house.
Today, Lore, of Weston, spends his days in bed or in a wheelchair, unable to move or speak. He is in the final stages of ALS, or amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. The disease affects nerves in the brain and spinal cord, leading to paralysis. It is fatal.
Most victims' minds remain active and fully engaged, akin to being a hostage in one's own body.
Lore and wife Tracy, happily married for 12 years, had their world turned upside down in August 2003 when John was diagnosed.
''He used to sing in the church choir and noticed he had some slurring of speech,'' Tracy Lore said. ``He went to the doctor for tests and they did not find anything, so he went to a neurologist, who diagnosed him with ALS.''
Now, John Lore communicates by using special eye-tracking computer software, which enables him to scroll through words or letters to complete a whole statement before sending it to a voice synthesizer.
''We had no idea this is what it would be. We were devastated,'' said Tracy Lore, now her husband's full-time caretaker. ``There is no test to diagnose ALS. Rather, the doctors rule out every other disease. We thought it was like MS.''
John, who had no previous health problems, was able to continue working as a senior project director for the Shaw Group, an environmental remediation company, for a year after he was diagnosed. But it became increasingly difficult for him to speak and eat. Lore suffers from the most aggressive form of the disease, which attacks the mouth and throat.
A feeding tube was inserted in 2004. When the disease affected his legs and arms in 2005, he went into a wheelchair.
The cause of ALS is unknown. There is no cure.
''It is not genetic and no one in our family has it,'' Tracy Lore said. ``The average life span for someone with ALS is 18 to 24 months. John has already outlived this expectation.''
When the boys give their father hugs, Tracy will wrap John's arms around them, helping him to hug them back. The couple said they feel fortunate.
''We are still enjoying our time together and we appreciate each other more,'' John Lore said.
``I still have a pretty good life. I cherish every day that I have. It's like I was living in black and white before I got ALS and now I am living in color. . . . There are many blessings that have come because I have ALS. I am blessed by having a wonderful family. Tracy has been my angel and takes good care of me.''
The Lore boys, both students at Country Isles Elementary in Weston, are featured in a 2007 calendar, Children's Faces of ALS, photographed by Jennifer Newman. The project took a year to complete.
All money raised from sales of the calendar benefits the ALS Association Florida Chapter.
The Lore brothers are featured on the month of June with their golden retriever, Max. Previously, the boys had been on both the local news and NBC Nightly News with Brian Williams, in a segment about children of caregivers. But they would have gladly given up the spotlight if it meant their lives had not been affected by ALS.
''We can't do a lot of things because Mom has to take care of Dad,'' Will said. ``I miss being able to go to the movies or to Disney World.''
John Jr. put it more succinctly: ``ALS stinks.''
The Children's Faces of ALS calendar is available at www.als-florida.org for $15.
- Faith and friends sustain Ken and Phyllis Swigart
By Marci Laehr Tenura
The Journal Times
Phyllis Swigart said she and her husband, Ken, have had their faith tested before in life, but they feel as though they are now facing their final exam.
And they don't plan to fail.
The couple has remained unwavering and prayerful, even as Ken has been diagnosed with amyotrophic lateral sclerosis, also called ALS or Lou Gehrig's disease. In a very short time their whole lives have changed, and the couple knows even more difficult days are ahead of them.
But they are not worried about tomorrow.
"Every day is a gift," Phyllis said.
"We believe that our entire lives are controlled by God," Ken said. "That's all the way from life to death. We feel like whatever God's plan is in my life, even though it's different than I would like it, it's God's choice for me and our family. We will honor that and however He chooses to use our experience to encourage others to recognize Him as in control of every aspect of our lives, we're willing to accept that."
A life-changing diagnosis Ken was diagnosed with ALS in June. He had been struggling to keep up with his usually active lifestyle after a major surgery two years prior. He couldn't jog anymore, his leg strength and ability to walk seemed to be getting weaker. Several visits to different doctors eventually sent him to the Mayo Clinic to see a neurologist.
The diagnosis was a shock to the couple. ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy.
Currently, Ken is still able to stand and walk a little, but stairs have become very difficult for him. Eventually he will be in a wheelchair full time. Treatments, such as leg and foot therapy given to him by Phyllis; acupuncture and body massages; and pool therapy, have become a part of his weekly routine.
Although there is no cure for ALS, and Ken is aware the disease will some day take over his body, he says he is grateful for the good life God has given him. At 65, Ken counts his blessings daily, including his 42 years of marriage to his wife, their three children, and grandchildren.
They are also incredibly grateful to their many friends from college, church, work, their neighborhood and the community for their encouragement and support.
Giving back to Ken "My greatest satisfaction was gained by helping others," said Ken, who has spent his career working in finance, mostly for non-profit organizations. "Upon my retirement, I was looking forward to the likely possibility of doing voluntary missions work."
Instead, Ken and Phyllis fi
