Jenny's Journey: donations

Tuesday, March 17, 2009

In Memory of Jenny

Jenny Tetlock passed away on Sunday, March 15th, from a debilitating form of motor neuron disease. Her life was cut short after a courageous struggle that lasted for more than a year. She left behind her brother, Paul, her mother, Barbara, and her father, Philip. A memorial service will be held in her honor on Saturday, March 28th, at 12:30 pm at the Lafayette Orinda Presbyterian Church followed by a lunch reception. All are welcome. UPDATE: We expect to have enough space to accommodate everyone who wants to attend, but would still appreciate it if you would RSVP to admin@jentet.com so that we know how many to expect.

Jenny often said that she wished the Kensington library had more to offer. In lieu of flowers, please send donations to Friends of the Kensington Library, 61 Arlington Avenue, Kensington, CA 94707. Checks should be payable to Friends of the Kensington Library, with a note on the check or in the accompanying envelope indicating that the donation is “In memory of Jenny Tetlock”.

Am I a Comparable?

To aid in finding a cure for the disease that took Jenny's life, we are still collecting information on any “strong comparables” to Jenny’s case, where a comparable is defined as someone:

(1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs,
(2) for whom the onset of the condition began before adulthood, and
(3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if
(4) the individual were female rather than male. And, it would certainly be of interest if
(5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature).

But, we would like to hear about anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.

It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny's case and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.

Jenny's Journey

Tuesday, March 17, 2009

In Memory of Jenny

Links

About the Photos

Am I a Comparable?

Related Links

Social Bookmarks