Tim and I will be on MDA Telethon

[Lorie]

As you all know I have been very involved with ALS. Terri with MDA of Alabama was there to help me long before we moved Tim home to Alabama. She knows how dedicated I am and wants Tim and I to be interviewed for the MDA Telethon. We feel honored to be a part of ALS Awareness. Of course, we said YES!

I am going to use my voice to speak for all. I am going to tell them about all the wonderful people I have met here and other places with ALS. And about my amazing brother, Tim. I knew and know that all the hard work will pay off.

I have posted her E-Mail Below:

Hi Lorie,

Hope your day is going well? As you know, May is ALS awareness month and we would like to do some profiles on people living with ALS. I was wondering if You and Tim and the rest of the family would be willing to do an interview with UTV44. They would come out to your house and do the interview with Tim and and You other family members who would be willing to talk on camera. The profile would run on our Telethon in September for sure. I would also see if they could run it on the local news during May. You and Tim seem so willing to speak out; I thought he/you would be great for an on camera interview. If this is something that interests Tim and you and the rest of the family, please let me know ASAP so I can contact UTV44.

Thanks so much. I look forward to hearing from you.


Terri Stringfellow

Health Care Services Coordinator

Muscular Dystrophy Association

[ZenArcher]

Great news and congratulations little miss celebrity :)

I have to admit though that I didn't know May was ALS Awareness month until I read your post.

[CindyM]

"Break a leg," Lorie, as they say in the theater. Actually you will do fine, I am sure.

[Icanmanz]

Thanks a lot Lorie! I'll be looking forward to it! I will pass the news to my friends, and relatives! Thank you, again! God bless!

Irma

[Thumbs Up]

I look forward to watching. I was back a few years on the phones for the MDA telethon in Toronto. I hope to one day get back in there for the fight against this disease, it takes too much of a backseat to other diseases. I will one day if I can get to the support meeting in Brampton pass on all the articles and videos on the subject of ALS. Al when is the next one in March?

[jimercat]

Hey Lorie!

Be sure to update us on exactly when y'all will be on air. Good luck to you both! And thanks for advocating!!!

[Lorie]

Thumbs Up-Right On! ALS does take the backseat. I think it is quite obvious. It is time for the END of ALS-Without a Cure! We can't sit on the back seat either, or it will stay there. I am just glad to get the chance to speak out.

Cute Jeff! Although, Tim asked me a while back that, one day how will I handle the Noteriety I get from speaking out for ALS and all the work I do. I said I personally don't want it for myself. But if people recognize me and connect me with ALS. That is all I want. AWARENESS and a CURE.

Thanks ALL for the Support. I promise I will make you proud. Yerri with MDA will let me know anyday now when they will come out and interview Tim and I. ALS is my Mission!

GO ALS/CALS TEAM, GO!!! This is just one of the Beginnings!!!!!


Lorie:-D

[Vicki S]

Congrats Lorie, I know you and Tim will let everyone know about ALS. This is great.

Its amazing how many people have Als. I went to the hospital in an ambulance and the ambulance driver said his uncle has it. Almost everyone I meet says they have a relative or someone they know with ALS.

Vicki

[Lorie]

There is a lot of people that either know someone with ALS, A family Member,Friend
or just Somebody that knows of someone with ALS. I have believed for a long time now, that they just don't have the number right. The ALS Registry Act will take a while. So in that aspect they are lagging behind in facing the fact that there are more people with ALS than thought. I had done my statistics for our area (S. Mobile) with MDA and the ALSA and Dynavox Tech. and Gulf Coast Rehab. Amazing! I knew it before that Article I sent you was in the Mobile Register. A lot of people either don't know to sign up with MDA or ALSA. The other thing that gets me. Dr. Yager the MDA/ALS Doctor/Neuro. here does not even give out any information for these places. Yes, I let them know about it!

I am going to find out if Dr. Yager is going to be interviewed by MDA? Oh Boy!

I have payed attention to all the new Members signing up here and other places. It is astonishing.

Lorie:(

[Thumbs Up]

It is unbelievable, I started a log years ago and I could not keep up with it. Everytime I received an ALS newsletter the in memory of grew and grew. I was also receiving the newsletter from California and just couldnt believe the numbers and that was back in 1992. I heard there are just as many PALS as MD, but PALS dont survive long enough ti stay in the numbers.

[Steve100]

I've found that theres been a few people just in my small town who knows someone with MND too.

Oh. and Lorie, can you let us transatlantic types know if you end up on you tube :)

Thanks and Best wishes

Steve

[Lorie]

Your message box is full. I can't PM you. Please empty!!

Lorie

[Steve100]

Hi Lorie - should be ok now :)

Steve

[Vicki S]

Hi Lori, Terry Springhill sent something that said Dr. Yeager was the ALS doctor. When we went for the clinic they told us that they hadn't for 5 years. So where is at? What do
you think of him. My neurologist doesn't think much of him and neither does his assistant. They used to an office next to him.

So please fill me in.

Vicki:-D

[Lorie]

Dr. Yager is Tim's ALS/MDA doctor. So we have to see him for MDA benefits. We don't like him at all. The ALSA started holding meetings every third Thursday in Bay Minette. Thanks to me. They were concentrating in N. Alabama. I hounded them. The next meeting is March 13th at 11:00. I can give you the specifics on E-Mail. Also, MDA holds a meeting every three months at Infirmary West in Mobile. I plan on being at both.

Dr. Yager, NO,NO,NO,NO,NO,NO!!!! We absolutely don't like him. I have talked with Terri at MDA about this several times. She says he is the only ALS/Neuro. Doc. they have. Unless you have to see him for MDa reasons. I think you would be better off with another Doc.

Lorie

[Geo]

Lorie Your so right i had a Neuro from MDA who was the same bad news .I got an invite from NIH to go to Bethesda and be in studies only i needed his signature on the App .He ripped it up said i dont think it will help .I said you had no right to do that ,he laughed and walked away .I wont go back to MDA anymore although the Gals at MDA office were sweeties he was a creep Geo

[Lorie]

I totally support MDA and ALSA. They know how we feel about the doc. MDA has done a lot for Tim. I will continue to support them. At the same time I will continue to let them know how disappointed were with this doc. Maybe they can find another one. What really pisses me off is (excuse my language) they dont even provide any information to patients that can help them. Like MDA and ALSA and NORD.I had Tim set up with them my self.
I called (doc) and raised hell with them over it. I am sure it didn't do any good!

Lorie-On your side!

[Lorie]

Angie with MDA of Alabama called me yesterday. She said that WJTC will be calling me to set up the interview with us. I told her it couldn't come at a better time. And I told her about myself. She went silent. I told her it was ok. I can't speak as an ALS patient because I do not have a DX yet and I am not set up with them. But I have a lot to offer.
I was communicating with MDA of Alabama long before we brought Tim home to Alabama. They helped me in so many ways. If you are not set up with your State's MDA. You really need to.

Angie said we will air on the Alabama MDA Telethon locally and probably the State in May. Remember May is ALS Awareness month. They will also air us through out the Month of May. She said she would notify me about the National Telethon in October.

Now I am going to contact our local News Paper and other Local Media outlets. Maybe more people will become more aware about ALS. I also have some other things up my sleeve. I will let you know if they work out.

Tim and I are ready. Bring it on.

Lorie