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5/11/05
Hey all!
I have been talking on the phone with one of our members, Lisa
Dalia, over the weekend and yesterday concerning the following event. She wanted me to pass along this information so as many
of you as possible could get involved. Hopefully some of your friends and other loved ones would like to be a part of it as
well. The event will take place with the coordination of American RSDHope, RSDSA, Aware-RSD, and a whole host of other Groups
that she has been contacting over the last week she said, the list was still being put together last night and more details
will be coming from the RSDSA I believe as to their involvement.
Here is the email she wanted me to share with you.
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Hi everyone- I have really exciting
news.
There is an International Foundation called Achilles. I met with the director (Mary Bryant) on Thursday the
5th and she said that the Foundation wants to add the cause of RSD to their roster!
They are a very well backed foundation
that mainly works with people that have lost limbs. They work on a weekly basis with the soldiers at Walter Reed in Washington.
Their goal is to get disabled people up and ready to walk in a marathon- walk- run or roll to help them and to bring awareness
to their cause.
She has asked that I be the spokesperson for a New York chapter and if the response is high enough
they are hoping to expand it to all their chapters across the country.
So here is where you come in and how we start
this union off with a bang!
On Sunday June 26th she wants to kick off the RSD Awareness at their Hope and Possibility
Walk- Run or Roll. They are going to try to get Paula Abdul to walk. Trisha Meili (The Central Park Jogger) will be leading
off the race this year.
A few of the Sponsors are Cushman and Wakefield( one of NY's largest corporations ) along
with Goldman Sachs and Verizon!
I explained how heat can effect us and she said a tent will be provided. She has also
promised TV and news coverage for RSD.If you can't do it- ask your loved ones- this is a really amazing chance to get on the
map for awareness.
HOW TO REGISTER
Go online and check out their web site- www.achillestrackclub.org and register. Under the part where it asks your disability just list RSD.
Please send me an email and let me know if you are registering so I have an idea of how many RSD patient's and loved
ones will be coming. Include your name and email address.
Help us to raise money for RSD!
I hope to meet you
all- some many of you have helped me and now I hope this will help all of us!
Hope to see you there!
Lisa Dalia
If
you have questions please email me at edlisa@warwick.net (email for phone #).
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Thanks
Lisa! We wish you the best of luck with the event!
Never underestimate the power and reach of a single dedicated individual
to change the world, your power.
American RSDHope
www.RSDHope.orgCheck out our new Catalog including the National RSD Awareness Bracelets!
http://www.rsdhope.org/shop/Products.asp?DisplayCategory=83Don't forget to wear your RSD Awareness Bracelets during the run!
4/1/05
Message from American RSDHope
First I want to thank everyone who sent
in emails to California RSD Education bill AB 1648. I am sure John Garret of FOR GRACE in CA joins me in that thanks.
If you need a refresher or if you are new to the list, you can read the details on the bill by going to http://www.forgrace.org/trailblazer/march05.htmlEspecially those outside the State of California who took the time to help
out your out-of-staters! I am sure they will be happy to help you when it is your turn.
There are groups such as American
RSDHope, RSDSA, SCRSDA, RSDHarbor, RSD Discovery, For Grace, SteelAngels, Groups in Philly- Mars-, MN, Moving Forward, Mount
Laurel, Saco, Ragland, Patterson, North FL, Tri-Cities, Tri-Counties, Aware-RSD, RSD Outreach, RSD Pregnancy Pals, RSD Victims,
RSDHope Teens, Sue Pugh's Group, RSDHope College Quad, SKIP, Fighting Back, Beat RSD, RSD-Online, Jim O'Donnell Group, Isis
Farina's Group, Aware-RSD Teens and Parents, and so many other group owners that I just can't all mention here for lack
of space and time, that are all fighting together for National RSD Awareness. Not to mention all of the thousands of individuals
across the country where there are no groups who are willing to do whatever it takes to get the job done.
I am sorry
if I didn't mention everyone.
We have all talked about the need for some form of National RSDS/CRPS Education Bill,
hopefully funded by the NIH, to help educate and inform everyone in this country about our Disease.
Well, it starts
one state at a time. A few states have already accomplished theirs. Now we are working on California. We passed out the address
last week and so many of you wrote as I mentioned and we are grateful. But we hit a snag.
According to John Garrett
of For Grace, the CA RSD Group, "CA Assembly Health committee has been overwhelmed with e-mails of support for AB 1648-- so
they've decided they're not going to accept them. "
So what does this mean? John has asked everyone who can to get
PERSONALLY SIGNED letters to them within the next ten days. Here is the information on where to send them.
Dear RSD
Community,
THANK YOU for your LOUD VOICES of support from all across the nation for the California RSD Education bill.
They heard you in Sacramento!!!
However, it has been brought to our attention that the Assembly Health committee, who
will be considering the bill at a hearing on April 12th, has decided not to count any e-mailed letters of support-- as they
do not have signatures. Frankly, this committee is working overtime to kill this bill-- BUT WE WON'T LET THEM!
So
PLEASE, using the information contained in the link below, snailmail or fax a signed letter of support for AB 1648 before
April 12th. If possible, please send a letter to each Health Committee member.
If that's too time consuming
or expensive, please send/fax a signed letter to our legislative liaison, Tamara Odisho, in Assembly Member Fran Pavley's
office (her contact information is below.)
Link to Health Committee information:
http://www.forgrace.org/trailblazer/march05.htmlContact info for Ms. Odisho:
Ms. Tamara Odisho
Legislative Aide
Office
of Assemblymember Fran Pavley
Forty-first Assembly District
State Capitol
P.O. Box 942849
Sacramento, CA 94249-0041
916.319.2141
fax
PLEASE ACT NOW to send a clear message to Sacramento that the RSD community WILL BE HEARD!
Thank
you ALL!
John Garrett
President, For Grace
www.forgrace.org
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Thanks John!
Ok everyone, that's it for
now. Thanks for reading and we will see you later!
Also thank you for putting us over the five million mark and then
some on Thursday!
I deeply appreciate all of you pitching in to help here.
Tomorrow we will be sending out an
email regarding a WC issue;
then one regarding some new articles we have added to the website;
and Next Week we
will be sending out a special Announcement
"American RSDHope's 10 Year Anniversary Teddy Bear Naming Contest"
For
some preliminary details, check out the What's New Section!
Thanks again everyone!
Peace, the Board at American
RSDHope
www.RSDHope.orgPlease Check out our National RSD Awareness Bracelets and another RSD Awareness
Products in our On-line Catalog!
http://www.rsdhope.org/shop/Products.asp?DisplayCategory=77
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3/25/05
Hooray!
We are less than 10,000 hits away from the Five Million mark
on the website!
As we near Five Million hits to the website all of us at American RSDHope want to thank everyone who
has ever visited our website and/or shared our website with another patient, loved one, and/or Medical Professional.
So
many of you, especially Group Leaders and Medical Professionals, out there have shared our web address with fellow patients
and loved ones over the last ten years and all of us, especially Mom O and I, wanted you to know how much we appreciated it.
My Dad would have been so proud, is so proud, of our reaching this milestone. You guys meant the world to him and your emails
and cards after his passing meant the world to us.
Next month American RSDHope will celebrate its' Ten Year Anniversary
by the way!
I find it interesting that two milestones are being hit at about the same time. Back in 1995 when we started
our organization, back then it was called Maine RSDS Patient Advocacy Group, it was done in an attempt to help the patients
in the state of Maine gain access to more information about RSD.
The very next year I got involved with some good
friends on AOL and we discovered the lack of good information on RSD problem was far greater and that the internet was the
key to reaching even more people.
Eventually in January of 1997 with the help of a wonderful man named Norman Hennessey,
we started the American RSDHope website. Norman is our webmaster and has donated all of his considerable talents and time
over the last ten years to making the website what it is today.
I wish we had a way to tell who our five millionth
visitor is but we do not track visitors information, a fact which I hope you will be glad to learn :)
But since
we average about 25,000+ visits per week I would guess it is only a matter of days away.
On a personal note, we want
to say how privileged we feel to have talked to, emailed, and even met in person, so many of you over the last ten years.
We have met some of the bravest individuals you could ever hope to meet. So many people worship sports figures as Heroes in
this country. Boy have they got it wrong.
They need to meet some of you. They need to meet those of you with RSD who
despite the agonizing pain you deal with every day, run support groups and reach out and help others, like Catherine, Louise,
Bobby, Linda, Gary, and Sue, among others, and meet the spouses, parents, and other loved ones who work right alongside of
you.
They need to meet the teens who fight the stigma of being disabled every day and still go out and
raise awareness, like all of those on the Teen corner. They need to meet the parents, spouses, and even Nieces who despite
losing their loved ones to RSD still go out and fight for Awareness, like our March Hero of the Month. They need to meet the
Nurses, Drs. and other medical professionals who are heeding our call and educating their co-workers about the realities of
RSD.
You are true Heroes.
As are all of you who struggle with this disease every day and win the battle hour
by hour, day by day, for that is how we survive it. We cannot look years down the road and sometimes not even months or weeks.
But we can always look to each other.
So for this we are truly grateful, for meeting all of you, for seeing the struggles
you endure and overcome. It has given us strength over the years. And it never failed that when we needed an emotionall boost
most of all, it was then that we always heard from one of you with a note of encouragement or thanks, that got us back on
track and got us going again. You have given back more than you have ever taken.
Here's to raising the glass, here's
to the next five million!
Peace, it is all we seek
The Board of Directors of American RSDHope;
Keith,
Mom O, Karen, Petra, Ron, Lynn, Bob, and Kevin
www.RSDHope.org10th ANNIVERSARY TEDDY BEARS! RSD COMING SOON!
http://www.rsdhope.org/shop/Products.asp?DisplayCategory=79
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3/25/05
American RSDHope has been asked to assist For Grace in it's campaign to get an
RSD Education Bill passed in California.
This is another in a continuing series of State Education Bills being passed
around the country and you don't have to be from California to help, you just have to write a letter to help :)
Here
is the request from John Garrett, For Grace's President, and Cynthia Toussaint, Founder of For Grace.
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We
at For Grace are urgently asking all to write letters, e-mails, and make phone calls to the California State legislators listed
below to support AB 1648, the California RSD Education bill.
This bill is about to go before (2-3 weeks) their Assembly
Health committee for a hearing and vote-and we desperately need your voice to enable its passage. It has been brought to our
attention it is imperative that these legislators here from the RSD community-or this bill stands a good chance of dying.
Please don't allow this to happen-PLEASE TAKE ACTION NOW.
The California RSD Education bill (bill text provided below)
was introduced on the Capitol floor, February 22nd, by Assemblywoman Fran Pavley. This bill, if passed, will fund an RSD awareness
campaign through the state's Department of Health Services, targeting education to healthcare professionals and the general
public.
Once implemented, this RSD education campaign will provide crucial information to enable earlier recognition
of the disease, better, faster medical interventions-and
ultimately, save many lives from the terrible ravages of unchecked,
unmanaged RSD.
You don't have to be a California resident to act. ALL RSD voices from ALL over the country can send
a clear, firm and absolute message to these legislators that this bill is necessary for a better tomorrow for those impacted
by RSD. If this bill passes in California, it will help pave the way for similar bills throughout the country!
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For
all the information on how you can help, please visit the special section of their website that they have set up;
http://www.forgrace.org/trailblazer/march05.html
We are all in this together!
Thanks for your help!
Peace, Keith
American
RSDHope
www.RSDHope.org
Home of the RSD Awareness Bracelet
http://www.rsdhope.org/shop/Products.asp?DisplayCategory=83
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3/25/05
Update from American RSDHope
Hello Everyone, Keith from American RSDHope
here.
Not sure if everyone saw this last night. It is a pretty amazing story with what I think are pretty far-reaching
implications; possibly including other nervous system disorders including RSD!
The drug is called Aimspro and its derived
from goats blood.
http://www.mymultiplesclerosis.co.uk/aimspro.html What is Aimspro?
Aimspro is the trade name for an MS treatment
produced from the serum of blood obtained from specially vaccinated goats. The serum is obtained from the goats in the USA
and then sent to the UK for purifying.
Who makes Aimspro?
Daval International are a UK based pharmaceutical
research and development company. Founded by venture capitalist David Shotton from London in 2000.
How is Aimspro administered?
Patients
are taught to inject themselves with the drug in the upper arm, thighs or buttocks using a needle very like that used by diabetics.
How
does Aimspro work?
Aimspro uses Polyclonal Antibodies from the serum of goats that have been inoculated with a number
of vaccines to generate neutralising antibodies. The exact action is not fully understood and the technique is subject to
commercial confidentiality.
Does Aimspro work?
The trials have been very positive with many patients reporting
significant improvement. There have been very few reporting no improvement.
Are there any side-effects?
The
only reported side-effects have been a slight irritation at the injection site.
Is Aimspro a cure for MS?
No,
it is a treatment to lessen the symptoms of multiple sclerosis.
How can I obtain Aimspro?
Aimspro is not generally
available as the drug has not yet been licensed. The product is currently undergoing Phase III trials and it is hopeful that
the drug may be approved within the next year or two. In the meantime you can sign the petition being run by the Aimspro Patient
Lobby Group.
Where can I get more information about Aimspro?
The Multiple Sclerosis Resource Centre publish
a very good magazine, called New Pathways that has regular updates and news about Aimspro. Call 0800 783 0518 in the UK to
obtain your copy.
Are the goats harmed in the manufacture of Aimspro?
No, on the contrary, they are very well
cared for. They live on a farm in the USA, are looked after by qualified carers, are certified free of any disease and have
the freedom to roam around in large paddocks. Extracting the blood from the goats is very like people donating blood.
*********
Now,
it may be a while before it comes here to the states and I don't know anymore than what is shown above but let's all keep
an eye out for more information!
Peace, it is all we seek
Never underestimate the power and reach of a single
dedicated individual to change the world, never underestimate what you can do!
Keith
American RSDHope
www.RSDHope.orgCheck out our new Catalog including the National RSD Awareness Bracelets!
http://www.rsdhope.org/shop/Products.asp?DisplayCategory=83
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3/25/05
Good Morning Everyone;
I am updating our list of RSD/Chronic Pain Conference
page on the website and wondered if any of the groups out there was either;
A) Having an RSDS/Chronic Pain Conference
in 2005
or
B) Knows of an upcoming RSDS/Chronic Pain Conference in 2005
I do know of the RSD UK ANNUAL
CONFERENCE - 17th Sept. 2005
Louise and John, I didn't know if your group was going to be doing its annual meeting
or when/where the RSDSA's was going to be this year.
So if anyone knows details of conferences, one day, two day or
more, let me know and I will get them on the web site and then let everyone know about them :)
Also, for any of you
who live in the Portland, ME area. We need a few volunteers to help man a booth that our group, RSDHope, is co-sponsoring
with the RSDSA on April 30th right here in Portland, ME at the New England School Nurse Conference Health Assessment.
It
is a one day event and we will have a booth with information about RSD, especially how it affects children and teens. This
is not a big time commitment. It would be maybe an hour in the morning or lunchtime or afternoon. That's it :)
Drop
me an email if you are interested. I would especially like to get some teens involved who have RSD.
Oh yes, almost
forgot.
Our next Media Blitz Target is coming next week. I thought this time I would ask you all who YOU would like
to target!
For those Newbies here, we re-started this program in January of targeting a TV Show and bombarding them
with emails from as many people on the email list and their loved ones, as wanted to get involved, asking that they cover
our story on RSD and why.
So far we hit Montel and Dr Phil. No response yet. So now we hit another show. Your call
folks. Send me your suggestions and we will go with the most popular choice.
Have a good Sunday everyone.
Peace,
Keith
e-mail address is rsdhope@mail.orgwww.RSDHope.orgCheck out our new Catalog including the National RSD Awareness Bracelets!
http://www.rsdhope.org/shop/Products.asp?DisplayCategory=83
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