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LDN Research Trust *SURVEY* - for all who take LDN

Posted: Tue Sep 14, 2004 2:47 am
by LarryLDN
If everyone taking LDN could fill out this survey, Linda from the LDN Research Trustand LDN Petition will be compiling all the data received. They are trying to get things going over there in the UK working with Drs. Coles and Lawrence, momentum is building. Hopefully we'll all benefit from their efforts. They need the support of everyone taking LDN or in support of research and trials. This particular survey is for those who are using LDN for MS. The Petition is closing in on 6,000, so if you haven't signed it yet, please check it out.



The .doc file is available at http://www.larrygc.com/ldnsurvey/ This link should open up to a printable version of the survey (it is 2 pages). Please print it out, fill it out, and mail it to Linda in the UK. Check with your local post office for proper postage.


If you want to save the .doc file for editing and printing, right click on this link below and Save Target As ...
http://www.larrygc.com/ldnresearch/Appr ... y-Form.doc

You can also click on this link for the form, I just created the above link so it's easier to remember, to pass along.


Mail to:

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The LDN Research Trust
PO Box 1083
Buxton, Norwich NR10 5WY
United Kingdom



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Posted: Tue Sep 14, 2004 3:53 pm
by Xenova
Is this form only to be filled out by people living in the UK?

Posted: Tue Sep 14, 2004 4:15 pm
by LarryLDN
This is for all people who are, or have, used LDN for MS.

Posted: Mon Oct 04, 2004 4:50 am
by LarryLDN
The same link, http://www.larrygc.com/ldnsurvey will bring you to an HTML version of the survey, you can fill it out and Submit it right on the same page.

Latest News from LDN Research Trust

Posted: Fri Nov 12, 2004 1:47 pm
by LarryLDN
http://groups.msn.com/MSFriends/alterna ... 1&nopost=1


----- Original Message -----
From: Managers of MS Friends
To: Members of MS Friends
Sent: Friday, November 12, 2004 04:35
Subject: MS Friends Announcement - LDN News


Announcement from Managers of MS Friends





Exciting news! We have the Registered Charity No.1106636. Stephanie, Alex and I completed the Charity Commissions registration forms on 4th September, registration was granted yesterday 8th November. The red tape was endless as we had to prove that research was charitable but after several weeks of jumping through the right hoops we have finally made it:)

We now need as much publicity as possible. We have contacted numerous National and Local Newspapers, TV & Radio Stations this morning, we really need your help if you live in the UK. Local media are interested in LDN if it is of interest to their readers, we need people that are prepared to be interviewed and say how LDN is working for them and that clinical trials are needed. Is this YOU? Would you like to get involved and help? If you’re happy to do so, please email me with your full details. I will contact your local media and add your name to the list for the national media. Together we can get LDN into Clinical Trials, it’s a case of team work.

The next challenge is to get funding, if you have an ideas please let us know. The more ideas we get the better.

Best Wishes to you all,

Linda

Attached is the press release.

LDN Research Trust

Registered Charity No.1106636



LDN to be trialled as a treatment for MS



The LDN Research Trust established in May 2004, has come a long way in a short time, registering as a Charity, assisting eminent Neurologist Dr Alasdair Coles and Dr Lawrence with proposals to trial LDN as a treatment for MS.



The function of the LDN Research Trust is to raise £500,000 to fund clinical trials. This amount will be staggered as several trials are proposed. Trustees, Linda Elsegood, Alex Parker and Stephanie Rebello, work tirelessly without payment or numeration. Every penny given goes towards trials, only the actual day to day running expenses are drawn. To date £103 has been deducted, this includes the cost of the web site. www.ldnresearchtrust.org



Low Dose Naltrexone (LDN) has been used as a treatment for MS in the USA since 1985 but is relatively new in the UK. LDN was devised and developed by Dr Bernard Bihari, who is qualified in Neurology, Psychiatry and Internal Medicine in New York. His website is www.lowdosenaltrexone.org



How LDN Works: The benefits are due to the temporary inhibition of brain endorphins (a natural pain-killer, produced in the brain). Consequently this leads to an increase in the production of natural endorphins, helping stop the progression of MS, reducing painful symptoms and an increase sense of well-being. A 3 mg capsule of LDN is taken nightly for 4 weeks and then a 4.5 mg capsule thereafter, sometimes the dosage needs adjusting slightly.



In the recent LDN survey 97% of people with MS said they experienced symptom relief such as Fatigue, Bladder Urgency, Concentration, Depression, Balance, Mobility, Muscle Strength/Spasm, and Numbness etc. Many people with MS are unable to try LDN because the medical profession are concerned that it has not been trialled for MS. Numerous desperate people have had no choice but to source and fund LDN themselves from the USA. Prices range from £17.50 - £26 for one months supply including delivery.



Naltrexone is freely prescribed on the NHS, as an opiate blocker for Heroin addicts, in doses of 50mg often 3 times a day.



Mainly it is symptoms of MS that are treated and often with drugs that have not been clinically trialled for MS. LDN is no miracle drug and not a cure but anecdotal evidence suggests LDN helps stop progression and for many, improves symptoms and at such a low dose there are few to no side effects, any that might appear are normally gone within the first week or two.



The LDN Research Trust needs your help. To find out how you can help; Telephone 01603 279508 or email contact@ldnresearchtrust.org or write to The LDN Research Trust. PO box 1083. Buxton. Norwich NR10 SWY. They are waiting to hear from you today!


-------------end of message from Linda---------