Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Dear , I would like more information. I may be interested in doing this in the Denver,Colorado area. Would this pamphlet include HSP,PLS and ALS? It is a great idea!!! Please send me the details if you don't mind. Thanks, !!! Nichols Neuro Networking The following is posted on the ALSA website. Lori is an amazing person, and when she called me to ask for help with the Neuro Network, I was really pleased to be involved. We each put $40 in the pot for the 1st printing and delivered the flyers to dr offices in our area. The response has been amazing. It is nice to know those in our area will get info on support for their disease. My only concern is that each agency is limited as to how much room they have on the flyer, and SPF Spastic Paraplegia Foundation doesn't quite tell a newly diagnosed person that PLS is covered, so I've added " PLS Association " to the information. Now I'm worried that those with a new diagnosis of HSP would not realize the they are covered. Any ideas? I'd love to see others copy this in their community. It just takes one person to get the ball rolling, as Lori did. Thomson Inspired by Son's Battle Against Cancer, Chapter Executive Director Starts Neuro Network by Wosk, ALSA Staff Writer September 17, 2004 On a recent trip to Scotland, parents Lori and visited Donnachaidh Museum in the city of Bruar with sons (blond hair), (lower left) and . Most parents would have taken a long sabbatical after a young son or daughter battled back from one of the most aggressive forms of cancer and was given a new lease on life. Not the executive director of the Greater San Diego Chapter of The ALS Association, Lori . She couldn't wait to switch back into first gear and help people afflicted by Lou Gehrig's disease and other neurological disorders. When doctors announced last December that her 13-year-old son 's Burkitt's Lymphoma miraculously was in remission -- the answer to the family's prayers -- she couldn't wait to start that new project she envisioned while visiting the oncology ward. In each exam room at Children's Hospital San Diego, where was treated, there was an abundant array of informative literature that referred cancer patients to health care groups throughout the region. , whose father died from ALS 18 years ago, instinctively knew there was an immediate need for a similar neurological support network, and not limited to people with Lou Gehrig's disease. " After we received the awful news, all the information we needed about where to turn to for help was right there in the patient exam room, " said , born and raised in Orange County, where she was also a chapter volunteer and staff member before moving to San Diego. " There were materials from the Leukemia Lymphoma Society, American Cancer Society, Make-A-Wish Foundation, Mc House.every organization that you could possibly go to in San Diego County for help for a child with a cancer diagnosis. " For me that was a great comfort, even though we didn't use a lot of resources from those organizations, just having that information at my fingertips, knowing I could call, knowing where to go, made all the difference in the world. " I began to think, wouldn't it be great if those with a neurological disease or disorder could receive the same level of comfort and support that my family did on day one. " 's letter writing campaign, " drive " -- augmented by Starbuck's, she quipped -- and innate ability to " rally the troops " - - provided the impetus needed to form what today is the Neuro Network, comprised of 15 organizations - an alliance rather than a non-profit organization. " At the first meeting last February, everyone bought in, everyone thought a Network would be great, " said the Vista, Calif., resident. " We decided to produce thousands of 8-l/2 x 11 pad flyers that would be displayed front and center at neurologist offices and clinics across the county as well as each agency office. Each flyer lists the health care member and phone number. " The local groups involved with this program are the Greater San Diego Chapter of The ALS Association, Alzheimer's Association, United Cerebral Palsy, Parkinson's Disease Association, Huntington's Disease Society of America, Muscular Dystrophy Association, Epilepsy Foundation, National Multiple Sclerosis Society, American Heart and Stroke Association, San Diego Brain Injury Foundation, Post Polio Association, Myasthenia Gravis Foundation of America, Spastic Paraplegia Foundation, Transverse Myelitis Association and Post Polio Association. " It really came together through the efforts of all these people, every single person, " said , chairwoman of the Network board. They are just top-notch, caring people. " Less than eight months old -- and about one year since her son was diagnosed with lymphoma -- the Network is making a difference in many people's lives and expanding. The flyer has even resulted in an increasing number of calls made to the chapter. " I was sitting at a water polo match for my son the other day, " recalled the mother of three children. " This man says `what is The ALS Association?' He said his wife was just diagnosed with Parkinson's disease. I proceeded to tell him what I had learned about Parkinson's disease from my involvement with the Network and what the Parkinson's disease Association of San Diego could do for him. He began to cry. " ' also tapped into her seemingly unlimited reservoir of energy several years ago when she and a friend became the primary force behind the founding of the Greater San Diego Chapter of The ALS Association. " My son was wearing a Walk to D'Feet ALS® t-shirt on the Little League field, " remembered . " A lady walked up to him and asked him how he knew about ALS. Her mother had just been diagnosed with ALS, the grandmother of a teammate. He said `don't worry ma'am, my mom will help you.' He came back with the grandmother's name, the doctor's name, her date of diagnosis and said she needed a hospital bed. That was really cute. " Following this chance encounter, began to receive a cavalcade of phone calls from ALS patients. She knew what needed to be done, just like the Neuro Network. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 , Reading your great article reminded me of something I started to do last winter. Last winter while waiting for Lois when she was in surgery for her cancer I got a idea. I was waiting in the waiting room looking for something to read. There were all kinds of magazines and literature on different deceases. I reached in my back pac on my Jazzy and took out a the booklet on PLS. I always carry several booklets in my back pac. I placed it on the rack with the rest of the information. As we went to different doctors I would place one in each waiting room. I thought this would be a good idea for every one to do to get more information out the public. L. PLS, OH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2004 Report Share Posted September 29, 2004 , where did you get a booklet on PLS? Susieq in Calif " M. Lehman " wrote: I was waiting in the waiting room looking for something to read. There were all kinds of magazines and literature on different deceases. I reached in my back pac on my Jazzy and took out a the booklet on PLS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 , That sound so very good. With as many people working on this maybe we will all get to walk and dance again. Jane Anne Neuro Networking > > > The San Diego Neuro Network > > > Quote Link to comment Share on other sites More sharing options...
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