oec patient support

Official Websites

Dr. Huang's Official Website (in English and Chinese): includes instructions for patients on how to register for the OEC surgery; detailed description of Dr. Huang's Neurological Disorders Research & Treatment Center; extensive technical information about the regeneration, repair and functional recovery of the central nervous system

Dr. Ronald Doucette's Website on Olfactory Ensheathing Cells (in English): created by the scientist who first characterized OECs in 1984; includes a bibliography of relevant scientific articles and technical information on how to culture ensheathing cells

OEC Patients' Personal Websites

Chris Ackerman's Website (in English): provides an account of an American spinal cord injury patient's experiences (including undergoing OEC treatment in Beijing in May 2004)

Ardi Bouter's Fight Against ALS Together Website (in Dutch): provides information and coordinates communication (mostly for Dutch patients) regarding the treatment of ALS; created by the first ALS patient from the Netherlands to undergo the OEC surgery in China (in September 2004)

The Dunns Go To China (in English): the story of a Colorado firefighter's fight against ALS; includes a diary of his experiences undergoing OEC treatment in Beijing in November 2004

The Leo Hallan Homepage (in English): the story of a South Dakota, USA man who has been paralyzed from the chest down for 27 years; includes information about his decision to make the trip to China in April 2004 for the OEC surgery

Peter Marinussen's Website (in Dutch): provides an account of a Dutch PALS's fight against ALS; includes a diary of his experiences undergoing OEC treatment in Beijing in April 2005

Online Forums for Patients and Caregivers

CareCure Community Forums (in English): a free service provided by the W. M. Keck Center for Collaborative Neuroscience at Rutgers University in New Jersey, USA; according to the website: "The CareCure Community has over 6700 members who communicate with each other on the CareCure Forums. Most of the people have spinal cord injury or have loved ones with spinal cord injury. Over 2000 people visit the site daily, reading over 60,000 pages and posting 300-400 messages every day. The site has over 200,000 postings containing the latest information on care, cure, and life with spinal cord injury. These postings represent a deep, wide, and up-to-date database on spinal cord injury compiled by thousands of spinal-injured people, families, and friends." Below is a list of specific discussion threads that may be of particular interest (note that there are literally hundreds of threads on related topics):

Summary of topics related to Dr. Huang's OEG procedure (updated frequently by CareCure moderator Seneca)
Olfactory ensheathing glia FAQ (posted by Dr. Wise Young)
OEG Treatment of ALS (posted by Dr. Wise Young)
OEG transplants: to have or not to have (posted by Dr. Wise Young)
Beijing - Brief Report of My China Trip (Dr. Wise Young's account of his 2002 visit to Beijing & Guangzhou)
My notes from Dr. Huang's lectures (posted by Carecure member Jeff Weeks)
A summary of cell-based therapies being tried now in people with spinal cord injury around the world (posted by Dr. Wise Young)
Ten frequently asked questions concerning cure of spinal cord injury (posted by Dr. Wise Young)
NOTE: Several people who have gone to China for the OEC surgery have posted their progress on the CareCure Forum. You can get a list of these progress reports by doing a "Find" for BOEG03 and BOEG04.
NOTE: Site administrators Wise Young and Jeff Weeks also maintain a support website for the CareCure Community forums with many articles on aspects of spinal cord injury

Braintalk Communities (in English): a free service launched by John Lester (the information systems director of the Neurology Service at Massachusetts General Hospital); incorporated as a non-profit public charity organization; according to the website: "Braintalk Communities is an Internet-based online self-help support environment providing online resources for patients and caregivers to find and communicate with each other around the world. The focus of Braintalk Communities is on neurological illnesses with over 300 different support group categories covering the entire spectrum of neurological conditions... Over 200,000 people access Braintalk Communities on a regular basis, and it is the largest resource on the Internet for people seeking support for neurological disorders via online self-help groups." Below is a list of specific discussion threads that may be of particular interest (note that there are literally hundreds of threads on related topics):

ALS Braintalk Threads (list of forum topics related to ALS)
Personal Experiences with Research/Treatments
As told by OEC patient HIS OWN STORY (an account by a former OEC patient who had a very negative experience in China, followed by extensive discussion)
Several threads started by former OEC patient Jeff Hallowell (JAH39): "Back from Beijing", "The Truth in Black & White RE: OEC / Dr. Huang"; "OEC: negative or positive?"
Fetal Cell Surgery Raises Hopes & Fears (Chicago Tribune article followed by discussion)

Beijing OEGC Google Group (in English): an online forum started in December 2004 "for grads of Dr. Huang's OEGC transplant procedure"

ALS-TDF Forum on Patient Services (in English): an online forum sponsored by the ALS Therapy Development Foundation (the first ALS-focused nonprofit biotechnology company; founded by the brother of a PALS; based in Cambridge, Massachusetts, USA); significantly fewer posts than CareCure or BrainTalk

Voor ALS door ALS Forum (in Dutch): a public forum about ALS maintained by Dutch PALS Ardi Bouter; includes discussion and information about OEC surgery in China

Other Patient Support Sites

Cure ALS Ride for Life Website (in English)

Useful Internet Tools

Babelfish Translation Tool: translates web pages and text into many different languages including Chinese, English, Dutch, French, Spanish, German, Italian, Russian, Greek, Japanese, Korean, and Portuguese (unfortunately it does a terrible job of translating Chinese, but you should at least be able to get the basic gist)

This site is maintained by Priscilla Song and Joseph Walline on a volunteer basis.

links last updated: April 30, 2005