Thursday, May 31, 2007 - Join the Great American Hot Dog Challenge ALScounts saw in the morning paper that Americans eat more than 16 billion hot dogs each year. Every time an American eats a hot dog, if he or she would put one penny in a jar for ALS research, we would raise $160 million in a year - many, many times more than is being spent on ALS research today. So please join the challenge and think about ALS with every hot dog you consume and send some money to your favorite ALS charity that funds research.
Wednesday, May 30, 2007 - Sound Off 1-2 Sound Off 3-4 Since May 30 used to always be Memorial Day, perhaps we should make it a day to pay attention to the troubling numbers related to our veterans and ALS. Every American should be aware of this! This news item is particularly well done in ALScounts' opinion (from KVOA in Tuscon). Don't hesitate to tell your Congresspeople and Senators about it today.
There's no doubt our military men and women are at risk on the front lines. But according to recent medical research, it doesn't end there. When they come home, the risk of developing a terminal illness known as ALS, or 'Lou Gehrig's Disease,' is higher than in the general public.
Tuesday, May 29, 2007 - We Need to Get the Word Out! ALScounts is convinced that we all need to do a better job of raising the noise level about ALS. It needs to stay in front of people so that they'll pay attention. The name is impossible for most to remember. Fortunately it is branded with Lou Gehrig's name and we're crazy not to be taking advantage of leveraging that brand, especially in the sports world.
ALScounts has found that many journalists are grateful to get brief, occasional emails with story or column ideas or news tips. Here are two that you might want to pass along to a radio sportscaster or a t.v. reporter or a print journalist today...
You'd be surprised what some grass-roots p.r. might be able to accomplish over time. Please be an ALS media tipster!
Monday, May 28, 2007 - Coincidence? ...or Unrecognized Incidence? Notre Dame All-American football player Pete Demmerle, who played on the 1973 national championship team, died from ALS on Thursday. Notre Dame All-American football player Pete Duranko, who played in the 1966 national championship team, continues his battle with ALS.
Writer Fredrick Buechner describes coincidences in a way that likens them to God's whispers from the wings. ALScounts thinks that God is more than whispering. These odd coincidences and the large numbers of athletes who have been stricken with ALS are screaming at us that this disease isn't so rare.
Why aren't we gathering and retaining data so that we can distinguish between coincidence and unrecognized incidence?
Friday, May 25, 2007 - They Follow the Big Numbers There was an interesting article in the 5/22 WSJ by Amy Dockser Marcus entitled, "Funding a Cure." It told of patients with very rare cancers trying to fund specific research.
"Budgets are tight at the National Institutes of Health, labs are scrambling to find funding, and many private foundations and pharmaceutical companies don't invest in research for rare cancers. But for many patient advocates, there is a further obstacle. Sometimes they raise money and get no takers."
One might conclude that our research system isn't focused on paying today's rent and doing interesting science on vexing and important problems. Rather, the eyes drawn to paths with the biggest potential payoffs. The numbers are indeed important.
Sunday, May 20, 2007 - There's a Terrorist in our Midst
ALScounts.com went live less than two weeks ago. In that time, there have been at least 200 funerals for American citizens with ALS and there are at least 200 newly diagnosed.
In 2004 in USAToday, after burying her husband, Marilyn Adams wrote, "If ALS were a terrorist group taking thousands of lives each year, this country would throw people and technology and money at it until we had won. Not so with this disease. There's no cure on the horizon, the doctors tell me. It's like a terrorist in our midst, going strong."
Friday, May 18, 2007 - ALScounts Receives an Encouraging Email from Congressman Donnelly's Office We're very happy for a message from Joel that included... We’re going to take a look at the bill that would create a national ALS registry. I’ll let you know what we find out (as soon as we find it out).
I was very moved by “So Much, So Fast.” Although I can’t know exactly how it feels to have a loved one who is afflicted with ALS, I can imagine how difficult it must be to cope given the lack of effective medical treatments. I’m sure you kept hope alive during your mother’s illness, but I also imagine it was very difficult to do so—even much more so than it would be for one whose loved one is afflicted with another serious illness like cancer.
Again, good luck in your continued advocacy. –jre
Wednesday, May 16 Very Late P.M. - Congressman Ellsworth's Office Our whole contingent was able to meet for this appointment. This Congressional district has a very active community of people affected by ALS. Congressman Ellsworth introduced himself to us and was clearly interested in our stories, but the voting buzzer beckoned him, so our time with him was very brief. He left is in the care of his staff member Brian who listened and was engaged in what we had to say. We talked with him until it was time for the office to close. We appreciate both the Congressman's and Brian's interest and are hopeful of their support for the registry and the DOD research funding. ALScounts had run out of stickers by this time, but there will be more next year!
Wednesday, May 16 Late P.M. - Congressman Donnelly's Office ALScounts was dispatched to handle this call solo since scheduling had been a challenge and ALScounts was the only one in our contingent with a connection to the district, having gone to school there. I was to drop off a packet of materials for Lauren. I was bummed to learn that Lauren was in a meeting and I would not be able to hand the packet to her in person. It had been a long afternoon and I left the office. As I went out the door (keep in mind that there was a sticker on ALScount's back that gathered considerable attention during the day), a young man followed me and in the hallway asked, "What is it that you're needing? CDC funding?" I explained the need for the registry. He said that he had seen "So Much, So Fast," and that it had touched him. We then introduced ourselves and I learned that I was talking with Congressman Donnelly's Chief of Staff, Joel. He asked very pertinent questions about ALS and obviously learned a lot from the Heywoods' story. He said that they would go through the materials I left for Lauren and I'm hoping for his support. The appointment that had verged on being a bummer turned into one of the best of the day.
Wednesday, May 16 P.M. - Congressman Pence's Office We were supposed to meet with Danny, but he became delayed, so we met with LeAnne instead. We had talked to her about ALS in the past and did a quick update on the need for the registry and the DOD funding. Congressman Pence has not supported the legislation in the past, and we're hoping that his staff will review the materials and that he will see the fact that the ALS Registry Act and the DOD research can be an opportunity for Congress to save lives, especially of our veterans.
Wednesday, May 16 P.M. - Congressman Hill's Office We are grateful that the Congressman took time to talk to us, especially on a day when vote buzzers were pulling members out of their offices a lot. He is currently reading the Jennifer Estess memoir and was very interested to learn about ALS and how it affects Hoosier families. His staff member Joel (there are a lot of young men named Joel and Josh on legislative staffs) was engaged in the conversation, too, and we are hoping that they will review and sign the support documents we left for them. The Congressman was a good sport about letting ALScounts sticker another good suit. We also appreciated his taking time to learn about a terrible disease from plain old Hoosiers when he had a lobby overflowing with businesspeople champing at the bit to see him.
Wednesday, May 16 P.M. - Congressman Burton's Office As we got to the office door for our appointment with staff member Brian, who should exit than the Congressman himself! We were glad to be able to shake hands quickly and thank him personally for his early cosponsorship of the new ALS Registry Act. He graciously let ALScounts sticker his good suit before he continued on to his engagement. We then met with Brian who understands the registry issue and thanked him for his help Brian will review the DOD letter for Secretary Gates and we're hoping that Congressman Burton will also support the DOD funding for ALS research. This was another encouraging appointment.
Click the pic to learn about the blue mats.
Wednesday, May 16 Early P.M. - Congresswoman Carson's Office Our group needed to split up because of some scheduling conflicts, so the two of us who live in Congresswoman Carson's district proceeded to meet with Sara. Sara is aware of ALS both from our prior meetings and from a personal connection. We were pleased to be there to say thanks for Congresswoman Carson's support. She was an early co-sponsor on the new ALS Registry Act and will support the requested DOD financing. Sara made sure that everyone in their office was stickered before we left. We used a lot of stickers on that visit and they promised to wear them proudly in the halls and cafeteria. In addition, Sara asked us how we were doing in our other appointments. Since we were not be able to get an appointment with anyone in Congressman Visclosky's office, Sara said that she would try to make contact with her counterpart there to encourage his support.
Wednesday, May 16 A.M. - Congressman Buyer's Office This year after quick introductions with Congressman Buyer's Chief of Staff who is a family friend of the Indiana ALSA Executive Director, we moved the large office to meet with staffer Alison. She is new in Congressman Buyer's office and was not familiar with ALS, so we gave a lot of information on the disease itself. We were careful to point out the "ALS in the Military" white paper and studies which have shown a startling increase in incidence of ALS in military veterans. She also got a sticker as you can see. Alison listened to our requests and said that she will share them with Myrna (another staffer with whom we have met before and who understands ALS well because of a personal connection) and Congressman Buyer. Although we did not see his support on the registry act last year, we hope that will change in 2007, especially with his passion about veterans' causes.
Wednesday, May 16 A.M. - Senator Bayh's Office Staffer Josh saw us and remembered the cause from last year. Last year Senator Bayh supported the ALS Registry Act and Josh anticipated that would also be the case this year. He's an enthusiastic staffer and baseball fan who is very aware of ALS and all the good that Curt Schilling has done for those with ALS. We tipped him off that he might run into Tommy John or Kent Hrbek among the ALS advocates wandering the halls on Wednesday. We look forward to Senator Bayh supporting both the ALS Registry Act and the DOD funding for ALS research, and we are confident that Josh proudly wore his sticker all day!
Wednesday, May 16 A.M. - Senator Lugar's Office Our first appointment was with staff member Liz who had met with us last year, too. We moved to the cafeteria in order to have room to accommodate our large group -- three generations of one family whose husband/father/grandfather has ALS, a recent widow of a PALS (whose whole family including three young children attended Advocacy Day two years ago), a recent widower of a PALS, a woman whose mother died from ALS, and the executive director of the Indiana ALSA chapter. Notice that Liz (in the pink suit in the pictures) was duly stickered and listened attentively to our stories and request for a registry and for DOD funding for ALS research. She promised to share the information with other pertinent staffers (including Georgiana with whom we had met previously, too) and that Senator Lugar would consider our requests. We're hopeful of his support, especially since one of his staffers had served in Iraq. It would also seem to ALScounts that ALS in the military would have special significance in his foreign relations work.
Wednesday, May 16 - A.M. Stickers are the Fashion! ALSA provides "Strike Out ALS" stickers which advocates proudly wear to keep ALS and our cause in front of the thousands of people on Capitol Hill. ALScounts likes to make sure that everybody we talk to in the legislators' offices is stickered and gets in the spirit with us. Even our bus driver was happy to be stickered!
Wednesday, May 16 - We're Ready to Roll It's early morning in DC and we're getting ready to go to the bus caravan that will take an estimated 800+ advocates to Capitol Hill. We'll be asking for support for HR 2295 (The ALS Registry Act) and for DOD funding for ALS research. We'll keep you posted.
Monday, May 14, 2007 - The ALS Advocates Prepare to Swarm Advocates are starting to converge on DC and preparing for a "record crowd" day on Capitol Hill on Wednesday. Indiana will have six volunteer advocates taking the cause to our legislators. Our tentative appointments are: 9:30 am - Senator Lugar 10:30 am - Senator Bayh 11:30 am - Congressman Buyer 12:30 pm - Congresswoman Carson 1:15 pm - Congressman Souder 1:30 pm - Congressman Burton 2:30 pm - Congressman Hill 3:15 pm - Congressman Pence 4:00 pm - Congressman Ellsworth TBA - Congressman Donnelly TBA - Congressman Visclosky ALScounts will let you know how each goes. Today there are preparatory meetings and a Candlelight Vigil at the National World War II Memorial.
May 10, 2007 - ALScounts Prepares for Advocacy Day in Washington, DC Next Week Last night ALScounts attended a vigil celebrating ALS Awareness Month in Indiana. It was originally supposed to be a candlelight vigil but there is a rule against candles in demonstrations on Monument Circle, so this was a glowstick vigil (which was pretty cool). Almost 200 people attended, celebrating the lives and courage of those affected by ALS. Several people who are traveling to DC next week to meet with our legislators attended. The ALS Association Indiana Chapter is making appointments for our contingent to meet with the offices of every Indiana member of the Senate and Congress on May 16.
May 7, 2007 - ALScounts.com goes live! May is ALS Awareness month. ALSCounts is preparing to participate in ALS Advocacy Day where we will approach legislators to support a national ALS registry. We'll chronicle that day here.
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................