{worth reposting} 2009 Muscular Dystrophy Summer Camp - the best week of the year!

Sean was able to attend his seventh MDA Summer Camp. He was a caveman with his buddy Ben. Best camp yet!!

Unfortunately, one of the campers was diagnosed with H1N1 (swine) flu following camp and required care in the ICU. All remaining 2009 summer camps were cancelled to keep everyone healthy. While I understand the necessity of that decision, I feel sad for those who missed out on the fun. I think the picture illustrates my point.

{worth reposting} 2008 MDA Summer Camp - the best week of the year!

In 2008, Sean was a cowboy with his buddy Kevin.

{worth reposting} 2007 Summer Camp - the best week of the year!

In 2007, Sean was a pirate with his buddies Bryn and Holly.

{worth reposting} 2006 Summer Camp - the best week of the year!

In 2006, Sean was back and so was his buddy Linds!! This time it was superheroes camp and they were The Incredibles.

{worth reposting} 2005 Muscular Dystrophy Summer Camp - the best week of the year!

In 2005, Sean was a Sith with his buddy Linds at Star Wars camp.

November is National Family Caregivers Month

The true strength of the American family finds its roots in an unwavering commitment to care for one another. In difficult times, Americans come together to ensure our loved ones are comfortable and safe. Whether caring for a parent, relative, or child, our Nation's caregivers selflessly devote their time and energy to the well-being of those they look after. During National Family Caregivers Month, we honor the individuals providing essential services to family members who could not otherwise look after themselves.

Every day, family caregivers assist loved ones with tasks ranging from personal care and homemaking, to transportation and financial assistance. As the foundation of America's long-term care system, these individuals give millions of Americans the peace of mind and security that only family can provide.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim November 2009 as National Family Caregivers Month. I encourage all Americans to pay tribute and support those who are caring for their family members, friends, and neighbors in need of assistance.

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"Tree of Life" from the MDA Art Collection

With extraordinary compassion and tireless love, caregivers dedicate themselves to others. I APPRECIATE, HONOR, and PAY TRIBUTE to the caregivers who sacrifice so much for "Jerry's Kids" like Sean & me and many others. Our lives are so much fuller because of you. We love and thank all of you, but would like to especially thank "Grandma Joyce" who puts her life on hold every time we need her. She is the most selfless individual I know and I hope to become more like her.

Another Medical Miracle Worker

Dr. Carol A. Osborn

Board Certified Family Physician Carol Osborn, M.D. specializes in managing and coordinating health issues and collaborative health and wellness for all ages. She graduated from Brown University with honors and earned her MD degree from the University of Cincinnati Medical School. Dr. Osborn completed her training in Family Practice as Chief Resident at the University of Utah Health Sciences Center where she received several awards for her teaching of both medical students and residents. In addition to her position as Associate Professor of Clinical Medicine at the University of Utah, Dr. Osborn practiced at the Madison Clinic where she served as the Medical Director for ten years.

In September 2007, Dr, Osborn received a Health Care Heroes award from Utah Business Magazine. She was selected for developing an innovative primary health care model, Evolutionary Health Care.

Why is she a hero to me? Dr. Osborn not only provided care during my high-risk pregnancy with Sean and delivered him safe & healthy, she also managed to diagnose his extreme developmental delays with the very first test she ordered! Perhaps the quickest diagnosis of Duchenne Muscular Dystrophy (DMD) in history....

Why does that qualify as heroic? Diagnostic delays are common in DMD. A new survey shows an average of 2.5 years elapse between symptom onset and diagnosis of DMD. Yikes! That's an average of 54 months tortured with the knowledge that something is wrong with your darling child but not knowing what is wrong or what to do about it. I believe knowing must be better than that. And, thanks to Dr. Osborn, I knew quickly.

A study that analyzed medical records has found that the average time between symptom onset and diagnosis of Duchenne muscular dystrophy (DMD) is 2.5 years, an interval that hasn't changed in two decades. This delay in identification postpones treatment that can slow the progression of the disease and results in lost opportunities for genetic counseling of parents.

The researchers say pediatricians and other providers of primary care could speed up the diagnostic process considerably by checking blood levels of creatine kinase (CK) early in the evaluation of boys with developmental delays. CK is an enzyme that leaks out of damaged muscle tissue, and the serum CK level is elevated 50 to 200 times above normal in children with DMD, most of whom are boys. A serum CK level is considered a good screening test for DMD, although DNA testing is required to confirm the diagnosis.

The initial screen, a blood test for creatine kinase, is widely available and inexpensive. In the past, one might have argued that little is gained by making an earlier diagnosis of an 'incurable' disease. Today, effective treatments are available that can temporarily preserve motor function and prolong survival. There is therefore newfound urgency in making a correct diagnosis that will become more pressing as novel treatments enter clinical trials.

MDA considers earlier diagnosis of DMD to be of paramount importance, because it provides parents with accurate information with which to make reproductive decisions, and because evidence suggests that the benefits of treatments now in development will be maximized if they're started as early in childhood as possible.

TELETHON ONLINE AUCTION PAYS OFF BIG FOR MDA

An impressive collection of unique and one-of-a-kind specialty items sparked bidder interest, bringing in almost $350,000 through the Telethon Online Auction to benefit the Muscular Dystrophy Association.

From Sept. 1 – 15, hundreds of items donated by celebrities, sports figures, MDA sponsors and other friends of the Association were sold in such categories as Celebrity and Sports Memorabilia, Unique Experiences, Travel, Electronics, Kids and Baby Items.

During the 15-day auction, held in conjunction with the 44th annual Jerry Lewis MDA Telethon, MDA and celebrities with items in the auction helped spread word of the auction by taking to their Twitter accounts. “Days of Our Lives” star and “Biggest Loser” host Alison Sweeney tweeted daily to her almost 37,000 followers about some of the “Days” items available for bidding, prompting retweets from her friends actress Denise Richards (1.1 million followers) and entertainment news personality Giuliana Rancic (1.3 million followers). “Access Hollywood” host Nancy O’Dell also asked her Twitter and Facebook followers to donate items to the auction, which resulted in multiple children’s packages and celebrity items. “General Hospital” star Brandon Barash also tweeted daily about the auction.

“These celebrities are part of our MDA family,” MDA President & CEO Gerald C. Weinberg said. “The fact that they helped promote the auction through Twitter added to the fun and excitement, and helped us reach out to a new audience.”

Items with some of the best final bids included a VIP package to the 2010 Telethon, $10,050; a 2009 FLSTSB Softtail Cross Bones Harley-Davidson motorcycle, $15,050; a 2010 Honda Fit, $13,800; an autographed Roger Staubach and Tom Landry Dallas Cowboys photo, $3,867; tickets to see ventriloquist Terry Fator at The Mirage in Las Vegas and have a meet and greet with him, $2,949; and World Wrestling Entertainment (WWE) event tickets and meet and greet with WWE Superstars and Divas, $2,525.

Daytime television items were also popular. They included meet and greets with “Days of Our Lives” stars Sweeney (Sami), James Scott (EJ), Galen Gering (Rafe) and Bryan Datillo (Lucas); a VIP package for a tour of the “Days of Our Lives” set with Sweeney, including airfare and hotel; a behind-the-scenes tour of “General Hospital” and lunch with Barash (Johnny Zacchara); a Barash autographed “General Hospital” script with blood from a shooting scene on it; and many more.

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

It's not too late to help "Jerry's Kids" (young and old!!). https://secure.mdausa.org/Donate/flashAppeal/1

The True Meaning of Labor Day

TELETHON TIME!!

Despite the effects of an uncertain economy, contributions and pledges to the 44th annual Jerry Lewis MDA Telethon over Labor Day nonetheless totaled $60,481,231 million.

MDA National Chairman and Telethon star Jerry Lewis said he was impressed by the show of support from Telethon viewers even during hard times.

“These are very special people, and their money comes straight from the heart,” Lewis said. “Right now, the only thing I can think of to say, other than thank you, thank you is, ‘love conquers all.’ So many people, everywhere, even with cares of their own, dug deep to show their wonderful compassion for others who need their help.”

The funds will allow the Muscular Dystrophy Association to continue funding worldwide research to find treatments and cures for muscular dystrophy and related diseases.

Contributions also provide assistance with purchase of equipment such as wheelchairs and leg braces; send thousands of children to MDA summer camp; and support more than 200 MDA clinics across the country.

I echo Jerry Lewis. Thank you, thank you; love conquers all! You ARE very special, compassionate people. Thank you for being willing to help families like ours with our muscular dystrophy concerns.

If you missed the telethon, it is not too late to make a difference for "Jerry's Kids" big & small. The online auction part of the MDA telethon continues through September 15. Bid now and get great deals on thousands of items.

http://www.cmarket.com/auction/BiddingForGood.action

A tribute to Ed McMahon

Ed McMahon
March 6, 1923 - June 23, 2009

For over 40 years, Ed McMahon shared his generosity of spirit and professionalism with the Muscular Dystrophy Association. He began his affiliation with the Jerry Lewis MDA Labor Day Telethon in 1967. McMahon received both the MDA's Lifetime Achievement Award and its National Humanitarian Award for his years of devoted service on behalf of people with muscular diseases. McMahon served as chairperson of the MDA Senior Citizen's Crusade and made many personal and news media appearances on behalf of the MDA. McMahon was a generous man who will be greatly missed at MDA and by MDA families like ours.

2005 Summer Camp - the best week of the year!