Has anyone elses MDA camp been canceled? My husband is a councilor every year and was supposed to leave in the morning and Justin was supposed to leave sunday morning. We got a call at 5pm tonight saying the national headquarters had canceled all remaining MDA camps due to swine flu. I am angry that they are cancelling it and angry that they waited til 5pm tonight!! Anyone elses been canceled? Justin is devaststed....


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I totally agree with you. Our son Jacob was at the same MN camp June 1-6, ie in the prior group. Now there are 10 kids ill with H1N1. An immunocompromised young girl died in Mn earlier from this deadly strain. Cheri
Hi,our son went to camp in PA everything was good till the last two days they called us saying that there was 3 or 4 kids showing fever and stomec ich,wich they send home our son came home one day eurlier[06/18] today he's not feeling good !

Cheri Gunvalson said:

I totally agree with you. Our son Jacob was at the same MN camp June 1-6, ie in the prior group. Now there are 10 kids ill with H1N1. An immunocompromised young girl died in Mn earlier from this deadly strain. Cheri
There's a group on Facebook now called "Uncancel MDA Camp". There's over 1000 members already.

It has direct responses from MDA and CDC to questions regarding the decision to cancel summer camp.

I believe this link will get you there if you're signed up for Facebook.
TUCSON, Ariz., June 19, 2009 — Due to overriding concern for the health and safety of Jerry’s Kids, the Muscular Dystrophy Association (MDA) announced today that it is immediately canceling the remainder of its annual summer camp program because of the H1N1 virus.

“These children are much more vulnerable because of their weakened respiratory muscles, so we are taking this preemptive action to protect them from possible exposure to the swine flu,” said Dr. Valerie Cwik, MDA medical director.

Approximately 1,800 children have attended 33 MDA summer camps in the past month, with another 2,500 scheduled to attend the remaining 47 camps that have now been canceled. An equal number of volunteer counselors also attend each camp.

Out of 1,800 children who’ve attended MDA camps this year, 11 cases of swine flu were reported after the children left camp. Six suspected cases have been reported at the MDA Summer Camp in Worcester, Pa., which ends tomorrow.

One child from the Pennsylvania camp has been hospitalized and is in stable condition. Another child, who attended camp in Utah, was hospitalized, treated and released. In Minnesota, 10 cases of swine flu were reported after camp ended there June 12.

On Friday, MDA conferred with officials at the Centers for Disease Control and Prevention in Atlanta, who concurred with the decision to cancel the camps as being “the prudent thing to do” based on the fact that these children are at such high risk for complications from the flu virus.

All children registered for camp as well as camp counselors, medical staff, paramedics and other volunteers are screened for any possible exposure to swine flu, as recommended by the CDC. Some volunteers were turned away based on this screening. However, a person may be infected with the virus and be contagious before actual symptoms appear, according to Cwik.

MDA mobilized its entire staff nationwide today to notify family members and volunteer counselors concerning the decision to cancel the camps.

“We know how much summer camp means to Jerry’s Kids and their families who look forward to this happy week all year long. But with 11 confirmed cases and six suspected cases in three states, we can’t risk the health of the children who would be attending the camps,” said Gerald C. Weinberg, MDA president and CEO. “We have an obligation to the parents of these children to ensure that safety is our top priority.”

We are devasted that we have to cancel camp, but at the same time the last thing we want to do is put any campers or counselors at risk. I am currently thinking about an alternate summer activity for all the campers and counselors later this summer, and I will be in touch with you once plans have formulated.

I That was the letter we got!
I agree with you 100%

Melissa Yurik said:
I'm sorry to hear that some of you are so upset with MDA. I agree it is a cover your a$$ mentality, but what would all of you say a child died of swine flu at an MDA summer camp? I would rather have my child disappointed and alive then go to camp and risk severe illness. I feel for the parents who have unreimbursable travel expenses and for that, I think MDA should work with those parents to reimburse them with camp monies.

Everyone is entitled to their opinion, I just disagree with many of the statements in this discussion.
I don't believe it's true that "NO child with a NMD can afford a bad 'bout with the flu". Not every MDA camper is immunocompromised. Not everyone has respiratory deficiencies.

It's over and done with now. The camp money - millions of dollars - has been wasted.

This is a letter I wrote to MDA on this subject. I got a reply from an administrative assistant, cut and pasted from one of their press releases.

Dear Mr. Weinberg, CEO Muscular Dystrophy Association

I'm writing to express my strong opposition to the MDA's decision last week to cancel the remaining MDA summer camps. I believe this was an overreaction of staggering proportion, and has unnecessarily disappointed 2500 children that don't deserve it - including my own son.

By your own numbers, less than 1% of the campers that attended camp became ill because of it. Only 2 even required hospitalization - one being treated and released. That equates to a 0.1% chance of hospitalization. These numbers assume that all 17 cases actually became infected at MDA camp, and they're all confirmed H1N1. No one died. No one is even in a life threatening situation.

The states where these incidents occurred were in the top 2 categories for swine flu activity. 40% of states are listed as sporadic swine flu activity by the CDC. Yet, you chose to cancel all remaining camps across the country.

As you point out in the FAQ section on your website, "some children attending camp have weakened respiratory muscles and are more vulnerable to the flu and possibly, pneumonia." The emphasis should be on the word "some". Many children attending camp have no respiratory deficiencies. Many children attending camp also have no immunodeficiency. Yet, you cancelled camp for all children.

You could have chosen to inform parents of the risk, and followed the CDC's "Guidance for Camps in Response to H1N1", available on their website. Following these guidelines, in the controlled, highly supervised environment of the camp setting would have greatly reduced the risk that was present. Fact is, the children could have been as safe as they are at home - safer than they are in the general public, and most certainly safer than they'll be in a school environment this Fall.

Parents of children with neuromuscular conditions are well acquainted with managing risk. We deal with risk on a daily basis, whether it's the treatments and medications we pursue, the clinical trials we choose to participate in, or the activities we involve our children in. I'll manage risk for my child - I don't need the MDA to do it for me. You raised $160 million in part to run camps. Minimize the risk and put on the camps. That's your job. Parents should have been informed of the risk and been allowed to make the decision to send their child. That's our job. I absolutely resent that MDA made this blanket decision for us.

I would very much like to speak with the person at CDC that viewed the cancellation as the "prudent thing to do". I specifically want to know what CDC's recommendation is going to be for our children this Fall, in the substantially higher risk environment of a public school.

Hiding behind statements like "it would be catastrophic if even one child died" is incredibly disingenuous fear mongering. Many people I've spoken with in the MD community feel the same that I do - this was a cover your ass decision made by a room full of lawyers. And we best understand the risk. Friends and family I've told about this are appalled that MDA would make a decision like this.

This was not done in the best interest of our children, regardless of how you want to spin it. Many of the campers could have attended with a very small level of risk of significant complication - a risk which would have been acceptable to their parents. Since most, if not all, of the money is already spent, this decision also represents a squandering of precious financial resources.

I think MDA completely mismanaged this situation, and I place the blame totally at the feet of the corporate office.


Keith Van Houten
Duchenne MD parent

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