Re: Holidays and Jolly Days

[Guest guest]

Hi Mike,

Permit me to bite off what you just said. You expressed it so beautifully.

Ditto, ditto and ditto.

God Bless

Yolanda

Holidays and Jolly Days

To all who have made the past 4 years extremely informative and

supportive for me:

I wish all of you a very Merry Christmas and New Year.

As I look back over the past 4 years, there are several things that have

evolved: PLS-NEWS was started so some of us could just talk about PLS

and related MNDs. Some of it is still discussed in PLS-FRIENDS, but the

support is most often found there. The SPF was created and has raised

thousands of dollars for research into PLS and HSP. The original

" Connection " has grown into connections all over the country with PLSers

and HSPers getting to meet others with whom they have corresponded and

forming even stronger bonds. The Synapse newsletter has become a great

resource for PLS information and support Levy publishes a

newsletter quarterly that discusses PLS and has some input from PLSers

who have given information he believes is important. NORD received

enough seed money to print a booklet about PLS to be distributed to

Doctors everywhere and to start some research. They also began running

tests on some of us who volunteered. Dr. Siddique at Northwestern

University has begun a long term study into the blood markers for PLS

among siblings and parents of PLSers. Reyerse has developed an

excellent data base for many PLS people all over the world. (There are

several who do not belong to PLS-FRIENDS or NEWS.) Thomson has

also started a data base for PLSers and has placed sponsors on her

website to get money for research. Ronnie Grove had a raffle for a Santa

last year that brought in money for research and she also has set up a

Connection in WV that is very popular and well attended. The TeamWalk

was started through seemingly tireless efforts of several dedicated

people. We have had some spats, some pats on the back, some tears shed

for each other, much laughter about falls and other PLS related things.

We have heard several stories of hope and some of sadness. We try to

tell each other that a positive attitude is the best medicine for PLS,

which seems to be true. We have learned about different types of PLS and

how PLS affects each of us in different, yet similar, ways.

There are many other things that have gone on. I can't forget Mark

Weber, who began this group, and Joe Alberstadt, who originated PLS

PALS, the first PLS email newsgroup. Kathy Geisler has joined us as one

with HSP who is very interested in finding a cure for us in the

immediate future.They have brought many others to our cause.

Gentner is also a highlight of the past four years. She seems to have

more energy than any five of us.

Many others are going unmentioned. I apologize. But with all our

efforts, with our persistence, with the help of researchers who are

behind us and supporting our cause - Dr. Fink and Dr. Siddique, among

others - I know we are not far from finding an answer.

Much has evolved in the past 4 years. My mind is overwhelmed by what has

happened by the efforts of a few people. I am also overwhelmed by the

love and support of the group. I am proud to be a part of PLS-FRIENDS,

even if I do have to have this sucky disease. I look forward to what

will happen in the coming year and in the years to follow. Time passes

quickly, as any parent knows when they look at their adult children and

wonder where the time went. Things will happen and in the next four

years I firmly believe that we will be looking at a cure that has just

developed, has already been developed, or is about to be developed. It

will be in our lifetime.

Again, I wish all of you, including the many whom I have overlooked and

wish I could have mentioned, a Merry Christmas and a Happy New Year. And

may all your days be jolly ones. (Remember the Positive Attitude.)

God Bless all of you,

Mike Gray