FWD:NEW RESEARCH GRANT AWARDED

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From: byrd45 (Original Message) Sent: 5/16/2007 7:38 AM
NEW RESEARCH GRANT AWARDED

This was announced by American RSDHope just before I left for my ketamine treatment but I realized that not everyone got a copy of it so I am sending it through the list.

American RSDHope and the RSDSA Award Grant for RSD Research to the Children's Hospital of Los Angeles

Lynne Orsini, Executive Director of American RSDHope, and Jim Broatch, Executive Director of the RSDSA, jointly announced this week the award of a $50,000 Grant to Doctor Richard Boles of the Children's Hospital of Los Angeles, California.

Doctor Boles' one-year Study will focus on maternally inherited mitochondrial DNA sequence variants and CRPS-1; Are CRPS-1 and other functional conditions genetically related through mitochondrial DNA?

Doctor Boles will examine up to 300 subjects over the course of the year and submit a final report to American RSDHope and to the RSDSA; a summary of which will be published on both websites.

This grant is the first time the two national RSD/CRPS Awareness Organizations have worked together on a research grant. Keith Orsini, one of the founders of American RSDHope and a long-time CRPS sufferer himself, said "We are all very excited here about working with the RSDSA on this project. Jim Broatch and I have long discussed our organizations working together on a project. When Jim shared Doctor Boles proposal with us, we knew this was the one."

CRPS, Complex Regional Pain Syndrome, is known as the most painful form of Chronic Pain that exists today. There is no known cure and very little in the way of treatments. It is most often linked to a nerve injury of some type but can be caused by anything from a burn, sprain, or surgery, to a break or a fracture. CRPS most often strikes victims in their 30's and 40's but can occur at any age. There are between 1.5 and 3 million victims nationally.

Keith went on to say, "I am very interested to see if Doctor Boles will find a link here, a genetic predisposition on the maternal side. RSD, or as it is being called now, CRPS, claims women as its victims as often as 65% of the time.

Lynne Orsini, Executive Director of American RSDHope, is very excited about the research. "I realize we have a long way to go - but this could be a very important step in the right direction. I hope this will bring more awareness to the general public about what a devastating disease this is."

According to Doctor Boles, "Our Hypothesis is that a brain/nerve energy deficiency plays an important role in the development of many functional disorders, including CRPS-I as well as migraine, depression, chronic fatigue, irritable bowel and others, at least in some people. This deficiency can be due to maternally inherited changes in the mtDNA code."

STUDY DETAILS

If you are interested in participating in the study, or simply learning more about it, please click on the following link;

http://www.rsdhope.org/Showpage.asp?PAGE_ID=45&PGCT_ID=4161

American RSDHope is a national non-profit organization dedicated to raising awareness of RSDS, or Reflex Sympathetic Dystrophy Syndrome, the nation's most painful form of chronic pain. For more information about RSDS, also known as CRPS, Complex Regional Pain Syndrome, visit their website; www.RSDHope.org or you can write them at; American RSDHope, P.O. Box 875, Harrison, ME, 04040. 207-583-4589

The RSDSA is a national non-profit organization dedicated to raising awareness of RSDS/CRPS, visit their website at www.RSDS.org or you can write them at; RSDSA, P.O. Box 502, Milford, CT 06460. Tel: 203.877.3790

Please share this information, as well as the Study Details, with your listservs, websites, and Support Groups.

You can also see this Press Release on-line by going to;

http://www.rsdhope.org/Showpage.asp?PAGE_ID=45&PGCT_ID=4160

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KETAMINE

Some of you who read my Ketamine treatment update had additional questions regarding the three different types of ketamine treatments being used around the world to treat CRPS. There are currently two basic types being used in the United States;

1) The AWAKE TECHNIQUE - This is the 5 day in-patient continuous infusion version pioneered by Doctors Correll and Harbut. It is done by a couple of Drs that I know of, most notably Dr Harbut in Hot Springs, Arkansas. In addition Dr Schwartzman in PA. Dr Getson was also doing it but I am not sure if he still is. I do not know if there are other Drs currently using this version, if anyone out there does please let us know. This technique has enjoyed great success and when successful does not need to be repeated for years. This is the version I just had done for the second time. My first was in early 2003.

You can find more information about this technique on our website at the page listed below. It is currently under FDA review and is not covered by insurance or Medicare.

2) Out-Patient Technique. Many Drs around the country are using this technique. It is done on an out-patient basis, meaning you come into the hospital or clinic for a few hours for an infusion but do not stay overnight. The infusion itself last only hours each day and is repeated many times over a period of days. Then the patient returns over a period of weeks, then months for additional infusions. This technique does not have the staying power of the one above, the relief gained is short-lived, but it is covered in part by some insurance plans (which is why more Drs are choosing this version I think).

Again, more information can be found on the website below and Dr Getson wrote an extensive article on his patients using this procedure for one of the past RSDSA Reviews which can be found on their website, we have included part of the article on the page below.

The third technique, one that has gotten a lot of publicity, is not currently allowed in the United States. I believe there are some Drs trying to get a study for it approved by the FDA though for the future. It is mostly performed in Germany and lately also in Mexico. It is called the Coma version. Basically they give you an Extremely high dose of ketamine and place you into a coma trying to re-set your bodies SNS. It has enjoyed mixed results.

Long-term effects of high doses of ketamine on both the body and the psyche are still unknown.

You can find additional information about ketamine including studiee, articles, and much more on our website; either by going to our maine webpage and clicking on the KETAMINE button, clicking under Ketamine and RSD in the WHAT's NEW section, or going directly to;

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=82

I am currently re-working this entire section of the website and hope to have the new look done in about a month. You can still access everything though.

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NEW SECTIONS and RE-WORKED SECTIONS

We have updated many sections of the website in recent months in case you haven't visited in a while including the Treatments, Terminology, Nerve Blocks, Need a Doctor?, Medical Articles, Poetry, etc. Check them out if you get a chance.

In addition, our Conference DVD's are being copied as we speak and should be available in a matter of weeks now. It took a while to get them edited and ready to be copied as we recorded them in hi-def this year. They came out great and I think people who get them will be very pleased. They will come in a set of three, one for each speaker; Doctor Harbut discusses Ketamine and RSD/CRPS, Doctor Chino discusses the Biobehaviorial aspect of pain, and lastly it is myself discussing A.C.T. - Acceptance and Committment therapy and Chronic Pain. More as they are ready to go!

Have a great week-end everyone!

Peace, and freedom from pain, it is all we seek,


Keith

American RSDHope

http://www.RSDHope.org

By the way, if anyone wants a copy of the RSD Awareness Ribbon graphic to put on their website, the one that is on the cover page of ours, just drop me an email.