As you can see, I have not been good about updates; actually, the indecision about whether to go forward with our March 28th fundraising event, as well as tragic events within the RSD community led me to avoid updating.  I guess I developed writer's block because I just didn't know what to say. 

However, because of the current downturn in the economy, we have made a DECISION NOT TO PROCEED with an evening which requires significant funding outlays and attendance guarantees in advance (as every "party with a purpose" does). and no guarantees of making it back.  We simply cannot afford to lose whatever we do have to allocate toward this most important research. 

• Young people are losing their lives to this dreaded syndrome!!!!  Blog after blog describes their agony, some written by anguished parents describing their horror of watching their children lose more and more ground each day and being unable to stop the agony. People call me for advice, but I don't have a whole lot to offer at this time.  My eyes fill as they relate their misery.  I remember it vividly; I realize how fortunate we are to have finally escaped this nightmare, and will not rest until there is relief for others.  Some blogs are even written after their children have actually died.  These young people, who once held so much promise, cannot have died in vain. 
  
• We all need to CONTRIBUTE as much as possible.  RSD can happen to any one of us - to our children - after a simple injury or surgery. 
• Tracy is testament that recovery is not impossible, but only a very few people of those who suffer can undergo what she did with the ketamine coma.  As I have told you in many of my entries on this blog, the Ketamine Coma is only for the most advanced, intractable cases of RSD that have not responded to any other treatments.   It is far too dangerous to use for lesser cases because of the huge risks involved, and it does not help everyone.  The people, including our Tracy, who elect(ed) to try this still experimental protocol are those in the most advanced stages - for whom quality of life is virtually nonexistent due to persistent, excruciating pain which makes them unable to function.  We need to spread awareness for earlier detection/diagnosis so that treatment can eradicate it before it advances to such horrific levels, and commit desperately needed funds for ongoing research. 

• Dr. Robert J. Schwartzman's research for a cure for RSD/ CRPS is too important to let it succumb to the downturn of the economy.  We need to bring RSD/CRPS patients back to life, to smiles, to productivity. 

The research  must be ongoing, as must Dr. Schwartzman's outpatient and inpatient care for RSD patients at Hahnemann University Hospital/Drexel University College of Medicine, where he is Chair of Neurology.  Dr. S. treats more RSD patients than anyone in the United States, and through his research and the sheer volume of RSD patients who come to him from all over the country, is in the best position to run these protocols.  My husband (who is a periodontist and understands much more of Dr. S's technical explanations than I) and I have sat with Dr. S on many occasions, first with regard to Tracy's care and later to determine how we can spread the word and raise funds to support his research. 

• Research is in progress, but the investigators are in dire need of funds to continue.  There's been a dramatic decrease in allocations due to the downturn in the economy.  And each day, more young, bright, beautiful people are stopped in their tracks - unable to move, in unrelenting pain.  Tracy wants us to help others get their lives back as she has.  She wants them to not give up hope, to keep fighting the urge to just give up.   They need our help!!!  Not everyone is fortunate enough to even be able to consider  the Ketamine coma Tracy underwent because of costs involved or their bodies being too fragile and compromised  to handle its dangers.  We need other options that will eradicate the pain at its source and stop the nervous system's errant tracking of pain messages to the brain.  We are losing too many people to this horrendous syndrome.

• We are truly saddened to not be able to go forward with the March Fundraiser.  We will plan another event in the near future, and hopefully get back to the original plan by the Fall or Spring of 2010.  At any rate, I know many of you were planning to attend the Dinner in March. We would be so grateful if you would still send as generous a donation as possible. 

• AND HERE'S SOME EXCITING NEWS . . .  We are committing funds to help Dr. Schwartzman open a state of the art, full-service inpatient RSD unit for proven and experimental protocols within the operational limits of what is approved in the United States, and hire another RSD neurologist to help him run it.  There is currently, due to the economic situation, a hiring freeze at the hospital.  They need additional funds which must come from outside sources to be able to commit to this planned facility and its operation.   If you remember when Tracy was to be hospitalized for her initial "awake ketamine", she was assigned to come in on a Monday morning and had to wait every day,  bags packed and in agony, for a single ICU bed to open (which did not happen till Saturday night) because her treatment was considered "elective".  This would mean that Dr. S would have his own beds and be able to admit patients at his discretion for treatment.

• For anyone wanting more information about donating toward this new center and the ongoing RSD Research for a safer, easier cure than the Ketamine coma, please contact me.  All donations will be greatly appreciated and, as in the past, are tax deductible. 
  

• PLEASE HELP!!!! We are losing so many promising lives to the nightmare of RSD; some have already tragically succumbed.  Others are in a constant never-land of intractible, unrelenting pain that keeps them from participating in the lives they once knew.  Please . . . with our help and the blessed team of doctors who truly care - Dr. Schwartzman et al - this torture can end.
  

Please spread the word . . . .  Awareness will help people get diagnosed and treated sooner - before it becomes full body and intractable.

Feel free to call our Foundation office at (215) 953-1730 to donate by credit card. 
The Foundation is an approved 501c3 Charitable Organization.

Please forward all checks to:

The BROOKS FAMILY FOUNDATION for RSD/CRPS

832 Second Street Pike - Suite 3
Richboro, PA  18954-1098
Phone:  (215) 953-1730 

Credit card donations gratefully accepted by phone.

HONOR AND MEMORY DONATIONS WILL BE ACKNOWLEDGED AS DESIGNATED.

Feel free to send me an e-mail if you'd like me to respond by e-mail or phone. 
                                       gayle.brooks@verizon.net

I am happy to speak with RSD patients/their families.  Some have asked me in the Guestbook to respond, but not supplied me with e-mail or contact numbers.  Feel free to do this privately by e-mail OR by commenting below, which will also come to my e-mail. 

With love and prayers for a cure with our help . . .
We need to stop the excruciating pain and give these people hope for a better tomorrow.

Gayle Brooks

Founder and Trustee

THE BROOKS FAMILY FOUNDATION FOR RSD/CRPS