It’s tragic when a young life is haunted by the specter of a disease that causes chronic pain. Such afflictions affect child and family both, making the availability of caregiver resources all the more vital.
Since 2011, The Coalition Against Pediatric Pain (TCAPP) has been supporting families of children affected by chronic pain from rare diseases and has brought many together to share information and resources. The national nonprofit also raises money to fund research focused on pediatric pain conditions and brings together esteemed medical experts from across the country to share ideas. Advocating for children affected by chronic-pain-causing diseases and educating the public at large about the long-term consequences of pediatric pain are also key goals of TCAPP.
The nonprofit was founded by families of children living with chronic neuropathic pain diseases, such as Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), Ehlers Danlos Syndrome, muscle spasms, migraines, abdominal migraines and painful gastrointestinal conditions. All of the founding members’ children have RSD/CRPS, in which high levels of nerve impulses are sent to an affected site on the body, and many suffer from multiple conditions.
TCAPP began working with Genelex in 2012, says Aurora Richards-Stipnieks, DVM, treasurer and board member of the nonprofit. The relationship began after Barbara Granoff, a founding board member of the nonprofit, used the DNA drug sensitivity testing Genelex provides to better map a drug regimen for her daughter, Shira, who is living with multiple chronic pain-causing diseases.
More information about Shira’s genetic makeup allowed her physicians to help ensure that medications she took did not accumulate in her body, possibly leading to adverse drug reactions, and helped them choose pain medications that work more effectively. This led to Shira having more trust in her medication routine, and ultimately, improved medication outcomes. Learn more about Shira’s story here.
Since then, Genelex has helped TCAPP raise almost $2,000 in donations for TCAPP through demonstrations of the YouScript Personal Prescribing System at two major medical specialty conferences, Richards-Stipnieks says. This is in addition to other Genelex contributions, such as working with TCAPP on their annual Think Tank events. These bring pediatric and adult medical experts together to share information and brainstorm ways to offer better treatment to children suffering from chronic pain.