why don't WE have a telethon?

[Jane]

Just curious, all weekend I've been seeing the MDA and hearing about Jerry's kids. Why doesn't the CFF have a telethon or other visable national event?

 

[anonymous]

Well, I'm glad we don't have a telethon like Jerry's kids. He just uses the pity card way too much if you ask me.

Have you read any of Harriet McBryde Johnson's pieces? She could have been one of Jerry's kids when she was young, but wasn't. Instead she's become a lawyer and a heck of a writer - even tho she needs PCA help for most all of her ADLs.

She also pickets Jerry's telethon every year in her powerchari carrying her "No Pity (front) Support Disability Rights (back)sign high and proud.


I've got a list of things I want to do when I retire. Going down and p;icketing with Harriet is right up there high on my list.

 

[anonymous]

whoops
that last anon was me, lisav.
thought I was signed in.

 

[anonymous]

about disability rights and the telethon

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cripcommentary.com/LewisVsDisabilityRights.html
">http://www.cripcommentary.com/...DisabilityRights.html
</a>
-lisav

 

[blindhearted]

A local station here in NC has a CF Telethon every year. They just had their 29th annual CF Telethon back in August. The CF Foundation is a part of it. Unfortunately it is not national. It reaches a small amount of viewers and businesses, mostly in Eastern NC. I have been on it for the last 5 or so years. when possible, doing interviews and singing. I was also on there when I was 3 as the CF Poster Child. I think I am one of the oldest CFers they have up there. I know they had a video of a CF girl who was 29yrs old awaiting transplant. This past year we raised $391,326 (6 million in the past 29 yrs). They talk about CF and what it effects, how many ppl, median age, treatments, research, etc. for 12 hrs to bring awareness to CF. It is the only CF Telethon that I know about.

 

[Asexyblond23]

I was thinking that same thing tonight when I saw it on TV. Yea I agree I dont want to play a pity card, but heck they rasied 61 million dollars this year, 61 MILLION!!! Can you imagine how that would help us all and research. I dont want to do it a pity way but wow how money like that would raise awearness and reserach!!

 

[letsrockcfem]

Duuude, I was watching the telethon today while in the hospital and thinking that too!! I was like man MD is a horrible disease but what advancements have been made in that past few years that have been big? So, in walks my CF doc. He gives me a listen then asks what I am watching. I tell him and he goes into this..."they make SO much money off this thing and where does it go??? there haven't been many new treatments or breakthroughs that I know of" "we know where our money goes..cf's life expectancy has doubled in 20years." It was just crazy how I was thinking that and then he walks in and says the same stuff. I just wish more people knew about CF and what it really is.
We need to hook up one of these for CF..I'll work on it!

 

[anonymous]

I don't care if the people donating the money pity pwcf or not, money's money. If that's what it takes to get the funds to cure cf or come up with new meds and treatments to preserve lung function and prolong life, then fine. Whatever it takes!

 

[65rosessamurai]

For years I was upset every time the MDA and Jerry Lewis (Is he STILL ALIVE???) put it on. I wondered why there was never one for CF, or even add CF to it.
Though my mom had once said that some research for MD also will help CF. I would be guessing that it had to do with genetic research.
Since we don't get the telethon over here, I don't have to get upset about it once every year (hehe), and while living in the states, I just shut it off after that, cause it did less good for me to watch it, anyway. All for the benefits of MD, but a little more for CF.
Whenever there was a CF Bowl for Breath, my mom would volunteer for it, and my siblings and myself would find sponsors for it. I just regret that it was during my teenage years, and I didn't find much of a "gung-ho" feeling for it, as compared to if it were now, I would more likely get involved with it.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Well, I'm glad we don't have a telethon like Jerry's kids. He just uses the pity card
way too much if you ask me.</end quote></div>

Amen.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>65rosessamurai</b></i> Though my mom
had once said that some research for MD also will help CF. I would
be guessing that it had to do with genetic research.<br>
<br>
<br>
<br>
From what I understand, MD is a genetic disorder very similar to CF
(in how it is passed on) and that some research that is now in
clinical trial for CF mutations with an X-stop mutation (x the
end), was originally found in MD research.  The developments
for MD showed long term side effects that weren't worth the
advances, but the trials for CF are showing none of those side
effects.  I don't have the sources, don't even know if this is
being published, but our geneticist shared this as they are doing
adult trials from our clinic and one up in Cleveland.

 

[rcq925]

Actually if you watched the research minutes, there have been a lot of advances in MD diseases. One of my co-worker's children suffers from Pompe Disease, an MD disease, and in April of this year a new enzyme was approved by the FDA that makes an amazing difference in the lives of these kids. Mallory luckily was in the drug trial and has been receiving the enzyme for quite some time. But they do make advances every year.

 

[rcq925]

I agree! Money is money when it comes to fighting CF! I don't care where it comes from. I think a telethon is a great idea for CF!

 

[rcq925]

Oh, I forgot to add. The money MDA raises does amazing things for the lives of patients with MD diseases. Not only does it support research (and we know there must be a monetary incentive for the drug companies to research new drugs that only help a limited population), but the money raised also allows the MD kids to go to MDA camp, where everything is accesible to them. They get to participate in all kinds of activities that they would otherwise not have the opportunity to do. THis is FREE to them and I think an awesome thing to do. The money also helps support MD clinics, we have one here where I live that provides medical services free to patients with MD. So the money they raise does wonders for research and for the patients afflicted with these diseases as well!!

 

[anonymous]

I guess I'd be curious as to what percentage of money earned goes to MDA -- CFF was rated by Forbes as one of the best charities because over 95% of their fundraising dollars goes toward medical/drug research. Same can't be said for some of the other charities.

MDA drives me bonkers 'cuz not only do they have their annual telethon, but it seems like every single month they have a jail and bail fundraiser -- round up people from different businesses and have them call their coworkers, friends, etc. to raise money. They contact my office at least twice a year.

Liza aka ratatosk

 

[Augustmom0003]

Unfortunately, using the "pity card" is what works...and if it helps people, raises money for research, brings new medicines to those who need it, funds camps, etc...then...who cares???? If you sit there and say how well everyone is...who's going to give money???? It's a sad fact...but it's a fact. I never, EVER ask for pity for Ethan...ever. But when walk time rolls around, OF COURSE I pull out the "pity card" in that desperate hope that some small amount of money I raise might go towards a new med...and yes that slightest hope of somekind of maintenance or cure...to save my son's life.

 

[Jennifer1981]

Hi Everyone,

I am very sorry in advance for how negative what I am about to say is going to come across, but I have CF and this is my viewpoint. Please do not read this if you get upset easily.

I feel that fundraising is great for diseases and disorders if you only want further treatments. I believe that cures were found long ago for various diseases, but cures to diseases means less money for insurance companies, less money for doctors, less money for lawyers for malpractice lawsuits, and so on. I could be here all day with who would receive less money and lose jobs. Not to mention as an example, I was a firm believer that stem cell research would have assisted in finding cures for some of the diseases not yet found. It was struck down by government. This was nooooo surprise to me. I didn't get the least bit upset.

Again, I believe that there have been great advancements and what not, but I don't expect a cure. That doesn't mean I don't do treatments or take my meds. I am very religious with anything pertaining to my health. I am married and trying to conceive. My belief that there will not be a cure doesn't stop me from progressing in life. It just makes me that much more determined to try harder to preserve the lung function I have. I also have a medical degree. I'm not ready to just give up. I'll always keep fighting.

Jennifer 24 w/CF