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Petitioning The National MS Society and 1 other

Help raise awareness of HSCT treatment for Multiple Sclerosis

2,998
Supporters

Please join me in petitioning the National Multiple Sclerosis Society (NMSS) to heighten awareness of a treatment currently under investigation and available around the world for Multiple Sclerosis and other autoimmune diseases.

Hematopoietic Stem Cell Transplantation (HSCT) is the transplantation of blood stem cells derived from the patient’s own bone marrow (not donor marrow or embryonic cells). These stem cells are removed and stored while a conditioning regimen (chemo and anti-inflammatory medications) is administered to the patient.  This halts the underlying MS disease activity in a large majority of those afflicted with MS.  After five days of immune conditioning, the individual’s stem cells are returned to the patient and the immune system begins to reboot and rebuild itself.  The new immune system has no memory of its past MS activity and no longer attacks itself.  Recovery and potential for repair begin within a self-tolerant immune environment.

HSCT is not a new procedure; it has been around and effectively used for the treatment of cancer since the 1960s. In the early 1990s, clinicians started utilizing HSCT to treat autoimmune diseases. To date, HSCT remains the only scientifically proven treatment to stop underlying MS disease activity and restore normal immune functioning with lasting curative effects in the majority of those with MS. Like any other chemo treatment, HSCT can be difficult to endure and expensive, but it is certainly doable. 

This was the case with my son, Daniel, who had MS since age 12, but was not properly diagnosed until age 18.  By the age of 28, despite many medication trials, he continued to decline, losing his mobility and becoming almost completely housebound for three or more years due to various complications. He was slipping away and I completely lost my son. 

On Facebook, we discovered HSCT treatment at Northwestern University, with Dr. Richard Burt. Daniel showed up in Chicago, Illinois with a wheelchair in tow and had an EDSS of 6.5.  Previously, over the last 3-4 years, my visits with Daniel probably averaged four days a week for a variety of reasons, which included lending whatever support he needed at the time.

Three months after he received HSCT treatment, I have seen very little of my son.  He is no longer wheelchair bound and his cane is hanging on the back of my chair.  Daniel is out socializing and enjoying his life; he has gained 25 pounds, has color in his cheeks, and a smile on his face. 

Years ago, I made a promise to my then-18-year-old son that if a cure existed, I would find it.  From my perspective, HSCT halted the MS disease process and, therefore, is OUR cure. It took me 10 years to find this opportunity for my son. I feel compelled to heighten awareness of HSCT for those suffering from MS and attempt to shorten the journey for other parents who find themselves in my former situation. I dare to imagine how a larger and more direct outreach program from the NMSS would touch the lives of so many.

I realize HSCT is not the answer for everyone.  It is not appropriate for every patient.  Nevertheless, I am incredibly passionate that the information should be made available to those seeking it.  Our National MS Society is the clearinghouse for information on Multiple Sclerosis.  It’s where patients go for help in navigating treatment options and HSCT needs to be included in the information they share. The United States has worked for years to find “cures” for all types of diseases, yet other countries make it so much easier to receive this treatment that patients are flocking outside of the US to get it.  Why? HSCT may very well be able to halt disease progression in patients with MS.  As the National MS Society has historically been at the forefront of innovative treatments, we need to return to this status by making such a ground-breaking treatment as HSCT more available and wide-spread in the US.  This fight starts at home.

When patients are declining and watching their lives slip through their fingers, they deserve a chance.  Any chance.  And just like I did for Daniel, they will stop at nothing to get it.

Please sign this petition and ask our NMSS for their support in an effort to raise awareness about HSCT as a treatment option for clinicians and those who suffer from MS.  You can also contact Timothy Coetzee directly at timothy.coetzee@nmss.org.

To learn more about this treatment, go to THEMSCURE.BLOGSPOT.COM or request an invitation to join two Facebook Forums dedicated to HSCT treatment:

Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases

 Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago

Worldwide facilities performing HSCT for MS and other Autoimmune Disorders:

USA – DIAD: Division of Immunotherapy and Autoimmune Diseases 

www.stemcell-immunotherapy.com

CANADA – Ottawa General Hospital 

www.ohri.ca/home.asp

DENMARK – Rigshospitalet  

www.rigshospitalet.dk/menu/

GERMANY – UniversitätsKlinikum Heidelberg 

www.klinikum.uni-heidelberg.de/willkommen.131853.0.html

INDIA – Manipal International Patient Care Center 

www.manipalhospitals.com

ISRAEL – CTCI: International Center for Cell Therapy and Cancer Immunotherapy

www.ctcicenter.com

ITALY – Careggi University Hospital of Florence

http://www.aou-careggi.toscana.it/internet/index.php?option=com_content&task=view&id=643&itemid=212

RUSSIA – National Pirogov Medical Surgical Center 

http://msclerosis.ru/eng.php 

SOUTH AFRICA – UCT Private Academic Hospital 

www.ucthospital.co.za/

SWEDEN – Stockholm Care AB 

www.stockholmcare.se

 

This petition was delivered to:
  • The National MS Society
  • Timothy Coetzee


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