2023 Golf for a Cure

Please browse the many great silent auctions available for our 2023 "Golf for a Cure" event at Riverton Country Club. All funds raised from this silent auction will go directly to Cure SPG47 and continue to advance our research projects, getting us that much closer to a cure!

"Cure SPG47" was initially founded in 2016 by the families of two newly diagnosed SPG47 patients, Molly and Robbie. At the time when these two families serendipitously met on Facebook, we were aware of just 9 additional documented cases of SPG47 worldwide. No research was being conducted on the disorder and no treatment options were being explored. The chance connection of these two motivated families lead to the forming of a 501(c)3 non-profit organization dedicated to raising funds and awareness about the disorder. As we learned more about the disorder and built an impressive scientific team, we decided to expand our non-profit mission to include all four of the AP-4 Adaptor Complex related sub-types of Hereditary Spastic Paraplegia (SPG47, SPG50, SPG51 and SPG52). We are eager to find out what we can accomplish with a larger number of families pulling in the same direction!

Coming to terms with an AP-4 HSP diagnosis for our children has been particularly difficult. Realistically, we understand that many researchers, donors, and drug makers will choose to focus their efforts on more mainstream diseases with larger patient populations. Yet the clock is ticking rapidly for our families, and without intervention, these disorders are expected to progress towards paraplegia or quadriplegia, with irreparable cognitive impairment, over the coming years. Despite the odds, we refuse to accept the prognosis or to give up on our children.

While our children struggle with mobility and fall behind their peers verbally, they THRIVE when it comes to personality and perseverance. Joyful smiles come so easily to them. Their lack of frustration at their communication and physical limitations is truly remarkable. Each milestone is celebrated exuberantly, even while we live in fear each day that muscle spasticity will worsen or a seizure will cause more brain damage.

We are driven to raise funds to direct towards the most promising scientific research. Our goal is to tip the odds in favor of all AP-4 HSP patients, giving them a chance at a high quality of life which will not be attainable without intervention through revolutionary treatments.