Ataxians unite

General
1

Dear fellow Ataxian,

My name is Doug Place and I have SCA6.

I may have seen or met you last week at the AAC conference in Las Vegas.

I have a chance to win a $2000 donation to the National Ataxia foundation and I need your help.

I have been nominated as one who has been active in my community to receive a $2000 donation to the non-profit of my choice. Naturally, I’m trying to win that donation for NAF.

Here is the contest website: https://a.pgtb.me/HQbVz2

I am listed (Doug P) in the Community category.

The person with the most votes on April 12th wins. That’s it. I asking for your vote.
You can vote for a candidate once every 24hrs.

Thanks for your support.

2

Hi Doug :slightly_smiling_face: I recall meeting you at the NAF Convention in San Antonio. I’ve voted, and wish you good luck. :slightly_smiling_face: xB

3

Hi, Beryl.

Sure, I remember meeting you. How are you?

I just got back from this year’s conference in Vegas.

What part of the U.K. Are you from? I have a dear friend named Maggie that lives in Preston in the western U.K… Maggie has SCA2 and I worry about her cause she lives alone.

Thanks for voting for me. Tell your friends. If I win, the money goes to Ataxia (NAF).

4

:slightly_smiling_face: I’m good thankyou Doug, and I hope you’re well recovered, I recall seeing your posts after a leg injury. I was able to watch the Conference online.
:slightly_smiling_face: And yes, I’m sure you mentioned Maggie to me. I live near Newcastle upon Tyne, about 10miles from the NorthEast coast. So I’m the opposite side of the country to Maggie, Preston would be approx 100miles from here, but we’re both Northerners :wink: I wonder if she’s near a local Ataxia Support Group :thinking:
I’ve voted for you again today :wink: and put a link on a Facebook Ataxia Support Group.
:slightly_smiling_face: xB

5

Hi Doug,

Did Dr. Perlman (UCLA) provide any hope for ataxia patients?

Thanks,
Piper

6

Thanks, Beryl.

Take care…

From Doug’s i-phone

7

Yea, she said five years

From Doug’s i-phone

8

Thanks Doug? Did you say five years for some type of a drug to halt progression or five years for a cure like gene editing?

Kind regards,
Piper

9

By the way, I voted for you.

Good luck!

10

I think were talking about gene editing here.

Drugs are good for symtomatic stuff, but the real holy grail is in the gene to really stop it.

11

Thanks. Spread the word…

12

:slightly_smiling_face: Dr Perlman specifically said…Within 5yrs there will be at least 1 approved modifying drug for ataxia. She didn’t elaborate beyond that. She also acknowledged more needs to be done for those of us who cope with non-genetic Ataxias.

13

Right you are, Beryl

From Doug’s i-phone