15 year old Jenny has passed on, but our continued struggle to make her dream, that no other human suffers and dies in the tragically painful and early way she did, lives on.

Neurologists and immunologists who worked with Jenny say that the best way we can prevent similar future tragedies is to find other persons who were similarly struck by the condition that affected her. By examining these rare cases, doctors and scientists may possibly be able to discover the trigger and mechanism that causes this and a whole family of neurologically debilitating disorders like Amyotrophic lateral sclerosis (also known as Lou Gehrig’s Disease and ALS), Charcot-Marie-Tooth Disease, Guillain-Barré Syndrome, Multifocal Motor Neuropathy, Multiple Sclerosis, Progressive Muscular Atrophy, Transverse Myelitis, and more.

The immunologists and neurologists are seeking very specific cases that were similar to Jenny’s. Below, we list criteria for being a “strong comparable”. You do not have to meet all criteria to be a comparable. For example, being male or not being vaccinated should not prevent you from contacting us. We are concerned about all such cases. However, it is important that the paralysis should be non-transitory.

The following information to identify comparables comes directly from Jenny’s family’s blog: http://jenjensfamily.blogspot.com/

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 (i.e. onset began between 9 and 30 years of age), 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.

Please send info about potential comparables to admin@jentet.com

Thank you for your time. We hope this Facebook group helps those struck just like Jenny and her family to find friends, community, and support through these trying times. (read less)

15 year old Jenny has passed on, but our continued struggle to make her dream, that no other human suffers and dies in the tragically painful and early way she did, lives on.

Neurologists and immunologists who worked with Jenny say that the best way we can prevent similar future tragedies is to find other persons who were similarly struck by the condition that affected her. By examining these rare cases, doctors and scientists may possibly be able to discover the trigger and mechanism that... (read more)