THANK YOU to everyone who supported Ronan's Spin-A-Thon at Pedal-Rancho MIrage in support of the National Tay-Sachs & Allied Diseases Association for their 5th Annual Day of Hope. The fundraising goal for the day was $1,000, and we kicked some ass by raising $2,887. Amazing!! Thank you again.
The fabulous community of Pedal-Rancho Mirage, my exercise home in the desert, has generously offered to host a fundraising ride to benefit National Tay-Sachs & Allied Diseases Association for their 5th Annual Day of Hope, on Saturday, Sept. 26th. Thanks, Pedal Peeps!
If you live in the Los Angeles area, or just in case you feel like a weekend of mid-century modern architecture, some poolside cocktails, and a bit of exercise for a good cause next weekend, come on down! And if you live in Palm Springs and you feel like sweating it out for kids and families affected by these hideous illnesses, or if you're one of my amazing friends who has always supported NTSAD in honor of my sweet boy Ronan, it's a $20 buy-in for a bike, and of course, you can donate without spinning.
Why is the NTSAD important? I'll tell you. When Ronan was alive, I paid at least $10,000 a year in medical expenses not covered by insurance - basic things like a bathtub and seizure medications that were not covered by my (actually excellent) insurance plan. I had access to the best medical care, in part because I did my research, and in part because I had the means. This is not the experience of many families, and the kids literally suffer for it. Expenses related to bathing and hygiene, replacement parts for machines that help with comfort level, and other necessities, are often hard to get coverage for. Some of the families with affected kids are low-income and live in isolated areas. They don't have time or energy to navigate insurance phone trees, and they are doing the very best they can for their kids, knowing that they will lose those kids within a 2-3 year time period. The parents I met through NTSAD offered crucial, life-saving support during the hardest years of my life. Each kid is imprinted in my memory.
My wonderful hubby will be providing fuel for our spin, and I'll be giving away books and possibly some other treats.
Come, if you can, and ride for Ronan and all these other beauties with me on Saturday. All monies will go directly to family support, which includes medical equipment, as well as expenses related to the annual family conference, where families are able to gather every year for a bit of respite and understanding and much-needed support.
Please consider making a donation to NTSAD. Thank you!