Jenna comes from an extremely large and close knit family who are always there for each other in so many ways possible. She is very blessed to have an abundant amount of cousins who range from ages 2 – 48, but unfortunately during her young 19 years of age 3 of her younger family members have been diagnosed with 2 extremely rare childhood diseases. One of those diseases is called Progeria Syndrome which 2 of her cousins (Nathan & Bennett Falcone) were born with and are still fighting to find a cure for, and the other one goes by the name of DIPG (Diffuse Intrinsic Pontine Glioma) which a very close family friend (Joseph DeToma) did not develop until he was 16 years old and unfortunately lost his battle in November 2021 at age 18.
Because of seeing how these 2 rare childhood diseases have affected many of her family members lives and knowing how truly blessed she herself is to be able to live the life she does with wonderful opportunities like playing Division 1 softball at Mizzou, Jenna plans on donating 5% of all of her profits from all merchandise sales on this website to both of the organizations affiliated with these two diseases at the end of every calendar year. We would also love to give you the opportunity to learn about both of these rare childhood diseases and make a difference by making donations yourself as well. Every little bit counts!!
(Hutchinson-Gilford progeria syndrome)
Hutchinson-Gilford progeria syndrome is a genetic condition characterized by the dramatic, rapid appearance of aging beginning in childhood. Affected children typically look normal at birth and in early infancy, but then grow more slowly than other children and do not gain weight at the expected rate (failure to thrive). They develop a characteristic facial appearance including prominent eyes, a thin nose with a beaked tip, thin lips, a small chin, and protruding ears. Hutchinson-Gilford progeria syndrome also causes hair loss (alopecia), aged-looking skin, joint abnormalities, and a loss of fat under the skin (subcutaneous fat). This condition does not affect intellectual development or the development of motor skills such as sitting, standing, and walking.
(diffuse intrinsic pontine glioma)
Diffuse intrinsic pontine glioma (DIPG) is a rare, aggressive, and deadly type of brain cancer that primarily affects children under the age of 10, with most diagnoses occurring between 5 and 7 years of age. It is a type of brain tumor found in an area of the brainstem known as the pons which is an area that is responsible for many of the body’s essential functions, such as breathing, blood pressure control, and eye movement. DIPG makes up 10-15% of all brain tumors in children, with about 150-300 new diagnoses per year in the United States. Unfortunately, fewer than 10% of children survive two years from diagnosis.