MDA Telethon

August 21, 2003

Sorry, I know this was a topic that created a lot of lively

discussion here lately, but I wanted to get everyone's opinion on

something. We just got a call from our local MDA office asking if we

would appear on our local TV station's MDA telethon on Labor Day.

They want to interview us with our daughter who is 16 months old and

just diagnosed with SMA last year. We were thinking it might be a

worthwhile opportunity. I know some of the people who post on this

forum particitated in MDA events as a child. What do you think?

Should we go for it?

Thanks,

Jerry

August 21, 2003

My own telethon experiences weren't so great, and we all know I'm not a Jerry

fan, but I don't think the telethon is inherently bad. If handled right, it's

a good opportunity to raise awareness. Your child will (someday) appreciate

it if you don't make her sound like either a tragedy or a hero. Be truthful,

just not melodramatic. :-)

~e

August 21, 2003

I don't think it matters that much at such a young age. I would hope you

would try to take control of the interview/photos to avoid the pity ploy. I do

worry that kids between 3-12 or so may get used to or spoiled by too much " fame "

or special attention because they are disabled. I've know some kids who got

babied and extra special treatment growing up that became whiny brats as

teens/adults. You shouldn't teach a disabled child they are allowed special

rights

(gifts, no chores, not study...) because they are disabled. I think being poster

child and the like can (not always) can give the impression to young minds

its OK to use your disability to get attention, gifts and your way. Teach them

they deserve equal rights.

August 22, 2003

Thanks for your responses, everybody! I appreciate hearing your

opinions. We've pretty much made up our minds that we will be going

on the local MDA Telethon, but I must be honest that I'm giving them

the benefit of much doubt and reservations. So far, our very limited

experience with the MDA is that they have not met our expectations.

We registered with them shortly after our daughter's diagnosis

basically because we were told it was a good idea to do so. Since

then, they have really provided no benefits to us. We are being

asked to help them raise money, but I don't know why. We haven't

benefited from their ability to raise money. I don't mean to be

critical of the MDA, but I honestly don't know who benefits from

their largess. We certainly have not benefited so far, despite many

promises up front that there are " many things " they could do for us.

After several inquiries, we are still waiting to hear from them how

they will personally benefit us.

Those of you who have worked with the MDA for several years, what do

you see as the benefit of your involvement? Is it just a strong

personal satisfaction that somewhere, somehow the money is going for

a " good cause " ? Or, have you personally gotten something out of it?

I don't mean to sound selfish, and I definitely do not mind

participating in a good cause if it's worthwhile, but I am genuinely

not very clear on what the MDA does persoanlly for anyone with one of

their diseases.

Thanks all!

Jerry

> Sorry, I know this was a topic that created a lot of lively

> discussion here lately, but I wanted to get everyone's opinion on

> something. We just got a call from our local MDA office asking if

we

> would appear on our local TV station's MDA telethon on Labor Day.

> They want to interview us with our daughter who is 16 months old

and

> just diagnosed with SMA last year. We were thinking it might be a

> worthwhile opportunity. I know some of the people who post on this

> forum particitated in MDA events as a child. What do you think?

> Should we go for it?

>

> Thanks,

> Jerry

August 22, 2003

I can remember when our family would be interviewed on the telethon (and the

telethon loved us since there are two of us), they would ask how MDA has

helped us personally. And I'd always stop and think, " um... well... I don't

really

know... " They've paid for a couple little things that our insurance wouldn't

cover. I don't mean to appear ungrateful, but really, those times have been so

rare and so relatively inexpensive. It hasn't exactly made any big difference

on our lives. We would have covered it one way or another. They also pay for

a yearly trip to their clinic. This is definitely more beneficial to them than

it is to me. Gives them a chance to study me and call it research. I only

keep going because whenever I need a prescription for anything, I can call that

doctor and he'll send it no problem.

The biggest personal impact MDA seems to have is through camp. And I have had

many wonderful years and great memories from camp. It's nothing like the

image the telethon portrays though. I don't enjoy camp because it's the only

chance I have to fit in, because it's an opportunity to forget about my

disability,

or because it's the only place I can have fun like anybody else. Honestly, I

felt like my disability was tossed in my face more at camp than anywhere else

in my life. But I enjoyed camp because it was a week escape from my real life

and I met so many great friends there. In just one week, we'd all get to know

each other so well, it was incredible. The drama and everything in that one

week was like a full semester's worth at school - tons of emotional highs and

lows in a very short time! But I liked MDA Camp in the same way I liked the camp

I used to go to through my church. Camp was great, the MDA part got on my

nerves. Though I can understand why they had to do a lot of the things that

irritated me. Funny, it never occured to me to not sign the photo release....

~e

August 22, 2003

The main thing MDA has done and continues to do for me is buy and pay

for repairs on my electric wheelchairs. Presently my husband's

insurance through work picks up a lot of the purchase cost, but they

cover anything left over. I've greatly benefited from having electric

wheelchairs, so I figure the least I can do is a little interview once

in awhile. Not that they are exactly pounding down my door. I'm a

little too positive now, being married with two kids.

jstalin02 wrote:

> Those of you who have worked with the MDA for several years, what do

> you see as the benefit of your involvement? Is it just a strong

> personal satisfaction that somewhere, somehow the money is going for

> a " good cause " ? Or, have you personally gotten something out of it?

--

Jenn Malatesta

--------------

My web page: http://www.isoc.net/brokeninside/nekrosys/

------------------------------------------------------------

Philo of andria:

" Be kind, for everyone you meet is fighting a great battle. "

August 22, 2003

In a message dated 8/22/03 9:20:59 AM Central Daylight Time,

jstalin02@... writes:

> We are being

> asked to help them raise money, but I don't know why.

You'r child is young, cute & has SMA. That's why. Do you see many 20-40 year

olds during the telethon? Maybe here or there...

August 22, 2003

In a message dated 8/22/03 9:20:59 AM Central Daylight Time,

jstalin02@... writes:

> We certainly have not benefited so far, despite many

> promises up front that there are " many things " they could do for us.

> After several inquiries, we are still waiting to hear from them how

> they will personally benefit us.

>

Besides paying for MD doctor visits, a little part of the cost of

wheelchairs/braces, summer camp, the MDA magazine and maybe an area support

group not

much. Mostly they claim to focus on research. At least that's all people I know

and myself have gotten. Most of it didn't dramatically change our lives after

the first few years of diagnosis. Many insurance (not all) help pay for

wheelchair/braces for children more than the amount MDA does and we had a few

disabled summer camps around here besides MDA. As for support groups well the

net

works well and FSMA has many state chapters, conferences and newsletters. I've

heard a few people claim MDA paid for a lot of things to make their life better

but none I know have gotten that much.

August 22, 2003

Jerry,

As a child MDA, diagnosed me at their clinic, did genetic testing on my

siblings, and paid for my body jacket. This was a great help when my parents'

insurance wouldn't cover it the body jacket. But for this support I had to go

their clinic every 3 months whether I needed to or not so they could document

the progression of my disability. This was a great hardship for my mother who

was working full-time and was single. I refused to go after they put me in my

underwear at age 12 in front of 30 med students, pushing me everywhich direction

to show I had not reflexes. They also told my mother every winter that I would

die this year. She finally told them tto f**k off. Attitudinally things are

better now, but they don't pay for much at all. Did pay for 1/2 of the

construction of the ramp on my 1st apt. in '82 ($600) but we had to fight hard.

Wouldn't pay for a headlight on my wheelchair so I can walk home from work

safely because it's not medical equipment...the same reason my HMO gave.

They're not much use to me with regards to promoting my independence.

The best thing they did was pay for summer camp for 10 years where I met many

wonderful people and I could show off my my skinny crippled body at the poolside

and not feel self-conscious. I enjoyed this and wouldn't participate in their

fund-raising. I and my friends wouldn't sign the photo release at camp...When

they disrespected our wishes to not be photographed (often) we flipped off the

camera so tthey couldn't use it.

It's a very complicated relationship.

Alana

>a " good cause " ? Or, have you personally gotten something out of >it?

August 22, 2003

I was told that the MDA would cover some of the cost of equipment for

my daughter, but after my insurance company declined our claim to pay

for a Kid Kart (pediatric wheelchair), the MDA also declined. We

eventually got it paid for through our state's Early Intervention

program. The MDA initially told us that they have this great

equipment pool if we need anything, but when I inquired about that I

was told that everything is presently loaned out. The MDA keeps

telling us that we can call them if we need anything at all. So, we

call to ask if they can recommend certain specialists, or the

location of a therapy pool or a list of PT's in the area. They

respond that they know nothing about that. We go to the MDA clinic

in New York, but I found out that the MDA contributes less than 1% of

the cost to keep it running (basically just the cost of naming

rights), and the hospital itself picks up the cost of the rest. At

hospitals in NY state, the MDA does contribute a lot of money toward

research into ALS & Duchenne MD, but I found out they are not even

close to being the major contributor in funding this research.

Several private foundations beat them by a long shot.

I am not criticizing the MDA for any of this. I just question if I

could better place my energies toward another group like FSMA or

FightSMA. Even though we have only been involved for a very short

couple of months, we feel like we are developing a complicated

relationship with the MDA like Alana said.

Thanks for letting me bitch.

Jerry

August 22, 2003

,

Wow. I didn't realize the numbers were that extreme. 92% is overhead?

Crazymadness! I'm just curious, where did that number come from? Is there an

official

source I could get that info from? And do you know what percentage of the 40

diseases' population is made up of SMAers?

Anybody have any idea why some forms of MD are deemed special enough by MDA

to get the majority of the research money? Do they affect a greater percentage

of the population, or what?

~e

August 22, 2003

In a message dated 8/22/2003 12:02:39 PM Pacific Standard Time,

jstalin02@... writes:

I am not criticizing the MDA for any of this. I just question if I

could better place my energies toward another group like FSMA or

FightSMA. Even though we have only been involved for a very short

couple of months, we feel like we are developing a complicated

relationship with the MDA like Alana said.

Just stay friendly enough that your daughter can go to camp, because camp's

great fun. But I wouldn't expect too much from them.

~e

August 22, 2003

I don't usually get involved in the MDA discussions because I have such

mixed feelings on it. But I thought I'd throw the statistics out

there. This is how a friend of mine put it when the question was asked on

another list:

92% of their incoming monies goes to overhead. Buildings, salaries,

travel, food,

blah blah. So that means that for every dollar someone donates to them,

only $.08 actually goes to research, equipment, or camps. Of the fraction

of that $.08 that goes to research, only 1% of their research money goes to

SMA. They cover 40 diseases under their umbrella, but ONE PERCENT goes to

SMA. You can do the math on what $.08 divided by say 3 sections divided by

1% would mean as far as donations on the dollar and what they are worth.

You also can not allocate funds to go to a specific disease. So say you

want to get a group of people to donate to SMA only. You can say on a

little form that that is where you want your money to go, but it doesn't

matter. At the beginning of each fiscal year they PREDETERMINE how much

money goes to each of the diseases. Whatever money people donate towards

that disease comes out of the amount the MDA would have given. So if they

pick $1,000,000 to give to SMA, and people donate $500,000 throughout the

year, then instead of SMA getting $1,500,000, it still only gets $1,000,000.

$500,000 from donations and $500,000 from the MDA.

I just find it really interesting, especially considering what a high

percentage of kids with SMA they have as their representatives over the years.

While I have been on the telethon talking about Taleah, and I've gone to

the thank you dinners and kick off dinners for the Fill the Boot campaign,

if we have money to donate it goes to other foundations with little

overhead and focused on SMA exclusively.

At 04:19 PM 8/22/2003 -0400, you wrote:

>In a message dated 8/22/03 9:20:59 AM Central Daylight Time,

>jstalin02@... writes:

>

> > We certainly have not benefited so far, despite many

> > promises up front that there are " many things " they could do for us.

> > After several inquiries, we are still waiting to hear from them how

> > they will personally benefit us.

> >

>

>Besides paying for MD doctor visits, a little part of the cost of

>wheelchairs/braces, summer camp, the MDA magazine and maybe an area

>support group not

>much. Mostly they claim to focus on research. At least that's all people I

>know

>and myself have gotten. Most of it didn't dramatically change our lives after

>the first few years of diagnosis. Many insurance (not all) help pay for

>wheelchair/braces for children more than the amount MDA does and we had a few

>disabled summer camps around here besides MDA. As for support groups well

>the net

>works well and FSMA has many state chapters, conferences and newsletters.

>I've

>heard a few people claim MDA paid for a lot of things to make their life

>better

>but none I know have gotten that much.

>

August 22, 2003

I realize I am a lot older than most of you and had many more years when

the MDA was more orientated toward suppling medical equipment than

research. But the amount of items MDA paid for for me is incredible. Our

family came across the MDA when I was about 10 years old, my father had

died and we had no medical insurance. MDA paid for a new manual chair

every year I was in school (I was rough on chairs as I did everything)

and any other equipment I needed (lifts, bath chairs and aids).They paid

for 4 motorized chairs. They paid for a new cushion every 6 months @

$400-$800. After college they continued to pay for anything I asked for

until about 13 years ago when they switched to more research and less

equipment. I never went to camp but as an adult we had yearly vacations

with all expenses paid for us and one companion. We had an adult

club/support group with monthly outings with all transportation paid by

MDA.

Oh, I forgot, they also bought 2 lifts for my 2 vans and the tie-downs.

I appeared on the local telethon yearly with several other adults to

tell about what we were doing with the help of MDA and also our

accomplishments. They also did a profile on me one year but it was very

positive telling about my teaching and tutoring and hobbies. I haven't

done the telethon the last 6 years because I can't get out of bed any

more. But all in all it was a positive experience with no pity.

Pamela

August 22, 2003

didn't specifically list references but said when she was given the

info. she went and checked it out for herself, that the financial records

and policies are easily found online and that she actually wrote MDA to see

if their policies had changed and they hadn't.

I have no idea how many they have with SMA as opposed to other diseases.

I'll e-mail her and ask for sources.

At 07:12 PM 8/22/2003 -0400, you wrote:

>,

>

>Wow. I didn't realize the numbers were that extreme. 92% is overhead?

>Crazymadness! I'm just curious, where did that number come from? Is there

>an official

>source I could get that info from? And do you know what percentage of the 40

>diseases' population is made up of SMAers?

>

>Anybody have any idea why some forms of MD are deemed special enough by MDA

>to get the majority of the research money? Do they affect a greater

>percentage

>of the population, or what?

>

>~e

>

August 22, 2003

>92% of their incoming monies goes to overhead.

Where did your friend get this erroneous information? It's ridiculous

rumors like this that hurt good organizations like MDA.

Lori

Re: Re: MDA Telethon