Letter Template

Let's get the word out!  Here's a template you may wish to copy, and send to possible advocates.  This could be your favorite celebrity, a trusted physician, a medical researcher, or really anyone whom you believe can help spread the word.  Feel free to change it to suit your needs, and just have some fun with it!

Date

Your Address

Your Phone Number

Your email Address

Recipient’s Name

Recipient’s Address

Dear XXXXX:

May 16, 2024 is Tarlov Cyst Disease Awareness Day.  As part of the day’s activities, I am helping people to learn about Tarlov cyst disease (TCD). TCD is an NIH-registered, rare neurodegenerative disease of the spinal nerve roots inside the spinal column that can lead to intense pain, loss of body function, and paraplegia. An estimated 9% of the population has Tarlov cysts, and of those, an estimated 1% are symptomatic.  Very few known, lasting, effective treatments are available at this time.  Many TCD patients move to  neurosurgery as a first line of defense, performed by one of four surgeons in the world.  The surgery has a 2-5 year recovery, and an estimated 70% success rate.  Currently, limited research is being conducted on TCD, and patients, of which an estimated 60-80% are women, are left to navigate a medical system that marginalizes and gaslights them, mostly because there are few answers.  Symptomatic TCD often generates incredible, indescribable suffering for patients and their families.

In honor of Tarlov Cyst Awareness Day on May 16, 2024, we are raising awareness for our disease through state/province proclamations.  We wish to expand our outreach beyond state/province government, and find ways to promote awareness among medical staff, as well as ways to support research.  Our vision is that one day, TCD patients will be expediently and accurately diagnosed, and offered effective, research-driven treatment options that are less invasive than neurosurgery, while supporting advances in neurosurgery. We invite you to visit our website (https://www.tarlovday.com), and sign up to receive email updates for the cause.

Thank you for helping me celebrate Tarlov Cyst Disease Awareness Day, and for your help in bringing awareness to more people.  If you wish to talk with me about TCD, you may reach me at the information provided.

Respectfully,