Tarlov cyst Research Foundation

Hi Everyone,
Having had the opportunity to meet with Dr Murphy here in Dublin, last weekend,
He was here lecturing at a Medical Conference in the Royal College of Surgeons, Right now he is in the middle of research the genetics of this rare disease Tarlov Cysts and related autoimmune diseases , At present he is working in Canada, beofre this he was in John Hopkins Baltimore working along side Dr Long, Neurosurgeon who is now retired but spent the last decade and more treating Tarlov cyst Patients, this research has been funded by the Foundation and through N.O.R.D* they chose the best candidate for the research,
* National Organisation Rare Diseases, NORD

I realise the need for research for Tarlov cyst disease, our Rare Disease, we need it to continue for the foreseeable future, and of course whats needed is money for this research, unlike other Diseases, Cancer, MS, and others we only have this One Foundation its in the USA, buts its the Only Foundation Worldwide, Its a non profit run Organisation and its Founding members suffer with Tarlov cysts also,
Patients can join Worldwide subscribe Yearly or donate any amount that is affordable,
we know in times of Recession money is scarce, but this is not only for us but our future generations,  Maybe a Birthday or a Christmas donation or have Friends and Family make a donation instead of a Present, I did that last year and my Friends and Family were only too happy as it saved them racking their Brains to think of something to buy me, so Its a win win situation all round,
Love Sharon xx soft hugs xx
ps below is a page from the Foundation, to join or to send a donation





Please consider joining the Foundation as a member and/or making a donation in support of our efforts to provide advocacy for Tarlov cyst patients all over the world, to promote and fund research, and to improve education about this difficult neurological medical condition.
We need and appreciate your donations in order to continue accomplishing the Foundation’s goals.
(Scroll down for Membership & Donation Form)
If you choose to donate by check and mail your membership fee/donation, please click on the print link @ the top of the form below,to print a mailable version of the form, which includes a mailing address to the Foundation treasurer.
Please mail to:
Cathy Carlomagno
140 Garden Ln.
Decatur, GA 30030

We invite you to join with us in the work of the Tarlov Cyst Disease Foundation. We welcome your knowledge, special abilities and assistance in helping us further the objectives of the Foundation.
One important way to help is to participate in our surveys. If you  had surgery or other procedures to treat Tarlov cysts, you have important information to share with us. If you are newly diagnosed and have not yet had any treatment, your information regarding your symptoms,location of your cyst(s), your geographic location, your age at onset and significant events at onset of your symptoms are all very important.We will collect this cumulative information and  put it into a scientific database. The analysis from these surveys, along with those conducted with physicians, will bring researchers one step closer to finding the cause, improved treatment and a cure for Tarlov cyst disease.
Another way to join us is by becoming a member of the Foundation or by making a donation. Becoming a member of the foundation is a choice and not a requirement, just as is the choice to make a donation to the foundation. The Foundation's website is free for all to view and become better informed about Tarlov cyst disease as well as to learn about the Foundation's efforts on behalf of all those with Tarlov cysts. Membership participation is one way of partnering with the Foundation, and membership fees will be used to fund and promote research and education. We will welcome your assistance in making a difference for the future for all those diagnosed with symptomatic Tarlov cysts.
"Philanthropy ... is a natural act of giving, prompted by a spirit of caring and concern."

Current Membership Benefits
Committee involvement opportunities to support the Foundation and become actively involved
E-Notes – E-mailed news updates with “behind the scenes” news and activities, such as reports on physician's collaboration activities, research dialogue, the board's contacts with research institutes, conferences, board meetings, grant proposals and applications, member news, etc. This information will not be available on the Foundation's website.
Member/Board liaison positions, whereby members will provide ideas and suggestions for the Foundation's  Board of Directors
Future Membership Benefits
Foundation Membership Meetings (regional or state) and Tarlov Cyst Disease Foundation National Conferences with education programs for members and their families and a social gathering sponsored by the Tarlov Cyst Disease Foundation
If you wish to join with us to further the Foundation's vision of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed and easily treated, please complete the Membership and Donation Form. We welcome YOU and your involvement!
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Tarlov Cyst Disease Foundation
Membership and Donation Form

"If you prefer to mail a donation and/or membership fee by check, rather than donate online, please print this form "
YES! I wish to join the Tarlov Cyst Disease Foundation and benefit from timely information in the Foundation’s E-Note Update and other communications.

 Charter Members ONLY (renewal only IF joined in 2007) $25
 Regular annual membership (joining after 2007) $35


YES! I would like to further assist the Tarlov Cyst Disease Foundation as a donor or as a supporter at a higher level.

Donor: Any amount less than $100
Sponsor: $100-$499
Patron: $500-$999
Benefactor: $1000-up
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