JXG Registries
There currently are two efforts to create JXG registries:
1) The Histio Heroes Research Fund (HHRF) is very proud to announce an opportunity for histiocytosis patients to play a direct and important role in advancing the ground-breaking research that Dr. Ken McClain and Dr. Carl Allen are performing through the Histiocytosis Research Program at Texas Children's Cancer Center. Please read the note below to learn how you can contribute to finding a cure: Invitation to Participate in Histio Research
2) The Histiocytosis Association of American (HAA) in conjunction with the Histiocytosis Association of Canada (HAC) are funding The Rare Disease Registry. This project is in its early stages and patients are not yet being enrolled. For more information, go to: Rare Disease registry by the HAA and the HAC

New Brochure about Histiocytosis
Please take a moment to read the wonderful new brochure that the Histio Heroes Research Fund (HHRF) created to raise fundings for ground breaking research being done by Dr. Allen and doctor McClain at Texas Children's Cancer Center.
HHRF Brochure

New JXG Video
Please take a few minutes to enjoy this wonderful and powerful video that Lee Purnhagen, one of the moms of our JXG Group, put together in honor of her son, Mason.
Mason's JXG Video

New Petition for Rare Disease 
Uplifting Athletes, a national nonprofit organization, has started a petition for Rare Disease. For children who suffer from rare-diseases, treatments can mean entering into a protocol that sometimes involves off label drug therapies and treatments. Nearly 3,500 children are treated by the National Institute of Health annually using these treatments. Once a child responds to the treatments and he or she is stable enough to transition out of the study, private insurers can deny the coverage for more treatments that have already proven effective. Nino’s Act would allow for these children transitioning out of the research trials with the National Institute of Health to gain access to continued treatments through Medicaid if their insurer does not recognize the treatment methods.You can sign the petition and read more about Nino's Act at: Nino's Petition

Upcoming Events
Shop for a Cure. Sunday, November 14, 2010. Newark, Ohio

* If you know any other events that could be helpful to the JXG community, please email us using our "Contact Form" located at the top left side of this page.Thanks!