NMSS and MSF

I am have tons of trouble trying to get help from the ms society and currently the MSF. I applied for help on Dec 6 and I have emailed them several times and they just wont reply to me. Im getting really frustrated with these societies that are suppose to help those with this crummy disease. They have no problem calling me or sending me stuff to ask me for money, but when someone is in need, they clam up. Guess this is a vent post. But I just wondered if anyone else has problems communicating with these societies?

[Scooter24]

Yes I have found my local Chapter in Charlotte very unresponsive, I have tried to volunteer with , sent 5 emails and phoned twice over four month period never rcvd a single response. They have contacted me for donation and they got the same response they gave me.

[agate]

Chapters of the NMSS seem to vary considerably according to where you live. I've had mixed experiences with them--in Chicago, in WA state and now in OR.

Some chapters don't have as many resources as others. Some have permanent equipment (like wheelchairs) on loan, for instance--others don't.

In general the MS Society's budget has concentrated on funding research over and above patient services, I think.

But if you've been having no luck with either the MS Society chapter or the MSF, it would be good if you could express your opinion to someone in charge at the organization.

I tried that once or twice and even approached the national headquarters by letter. I can't say I got any results but at least I had the satisfaction of knowing I'd voiced my opinion.

In general, I've found the MS Foundation and some chapters of the National MS Society to be quite helpful, though.

Keep trying!

[Thinkimjob]

To be honest, I probably haven't given the Australian MS Society much of a go.

Mainly because when I was diagnosed 13 years ago, they couldn't decide which state I lived in, and neither state branch seemed keen to have me. (I lived basically on the NSW/ Queensland border.) Possibly worried I might ask for financial assistance one day.

I wanted information and help about whether to disclose to my employer and dmds. These were the days when the Internet was young.

I eventually got one (1) brochure, with the apparently mandatory happy, sexy blonde MSer on the cover, and that was it. Of course they have had no trouble sending me and my family reams of fundraising stuff over the years.

I did ring last week, to ask about Tysabri, but it was a Saturday, and no one was in.

I called and emailed my local nmss about 18 months ago just to reach out and get information. Never got a call back or any informational materials, but I have received at least 30 robocalls and emails asking for money. They will not be getting any.

[agate]

starry1, I agree that not giving them money is best. After all, if you have MS, why contribute to the MS Society, which is there to help you? (Unless of course you have enough money you feel you can spare some for them.)

Membership in the MS Society is free for anyone with MS, and that makes all kinds of sense to me.

But you could give them a call and tell them how you called with a request 18 months ago but got no response. Maybe if enough people let it be known that they're not happy with their unresponsiveness, they'll improve.

[hunterd]

your responces seem to favor the negative. the nmss (local branch) hass
never taken more than one day to get back to me. the msf and msaa do take longer though, but never more than a couplee months.
many times there is a date that are accepting applications untill, and don`t respond untill everything is sorted out (in the case of financial programs anyway).
sorry your experiences have been negative. i hope that turns around for you.

I wasn't asking them for any assistance. That was just the first time a doctor had said the words "multiple sclerosis" to me and I was freaked out and wanting to get more info on what ms really was and hoping to meet others with ms, or something. If I hadn't found msworld I might have gone nuts. To this day I have only been contacted by money. God forbid I actually needed some assistance other than education. Why on earth would i give them money if they apparently don't do anything to help people locally? Do they, because I have personally seen zero evidence of that.

[tellnhelen]

Elevate the Issues

If you don't get the response you seek, ELEVATE the issue to the next level up. It seems to work at least at the local level. Express your concerns "in-writing" on hardcopy and email.

[Scooter24]

I am amazed on how the different societies hit us up for donations, but nobody else in my family or any of my freinds have ever been approached for a donation. Whats wrong with this picture?

[Thinkimjob]

We're a captive market, Scooter.

[lovejoy]

i have had the same exsperience , i dont bother to ask them for anything and told them to take my name of there call list.....in my opion they are just in it for the money, to big of overhead to make much of a dent, was reading on a mayo clinic site they need to rethink the whole dmd drug issue anyway, i just figure i will live hard and when i no longer can take care of myself i will just end it

[rdmc]

I called and emailed my local nmss about 18 months ago just to reach out and get information. Never got a call back or any informational materials, but I have received at least 30 robocalls and emails asking for money. They will not be getting any.

That was my experience years ago. I was looking for some info on doctors in the area, i.e. MS clinics. I called a few times, sent a few emails...no response. I later found what I was looking for online. And I've never attempted to contact them again.