August has arrived and you might be wondering, “why have I not heard from Michelle regarding this year’s Coast the Cure Neurofibromatosis (NF) Bike Ride”?  Well, the answer is multifactorial – but, mostly includes that fact that Michael and I will unfortunately not be riding this year as it falls on the same weekend as Parent’s weekend at Riley’s school (Coastal Carolina University); and, as Riley only has 2 years left in college (how has time gone by so quickly?!), we decided we wanted to spend the time with her in South Carolina this year. On the other hand, we have been considering a ‘ride on our own’ somewhere/sometime, but this has been complicated by the fact that I have had shingles for the past 5 weeks, making it hard to train. Regardless, some of you have reached out to me, asking how you can support our NF efforts this year, and so here I am, reaching out anyway, as the need to spread awareness about NF1 and the need to raise research funds is more important than ever.

As most know, (federal) financial support of research funds has been significantly reduced this past year, and this is as true for NF as it is for other medical conditions.  Typically, the Department of Defense (DOD) provides 15+ million dollars annually to NF research (in contrast, very little comes from the NIH); however, this amount was reduced to ZERO for the 2025 fiscal year.  This news was of course devastating for Michael and me, and all NF families.  Knowing that progress has been made in the past is so encouraging (there are 2 FDA approved drugs to try and treat NF), so watching this forward momentum completely halted is heartbreaking.  For this reason, NF research now relies more than ever on foundation grants from (smaller) organizations such as NF Northeast, the Children’s Tumor Foundation and others. Michael and I will continue to support these organizations, Riley, and all those affected by NF, and we hope you might too.

Speaking of Riley (AKA “Roo”) – she has had a good summer at home, mostly working a lot, in her favorite two places – in the sun (as a lifeguard) and in a clothing store (Garage) – and spending time with friends.  We head back to Coastal Carolina in 4 days, where she is super excited to start her junior year!  She is still a Communications Major (with a Sports Media emphasis) and a Public Relations minor, and has an internship interview already set up for next week.  The proud mom in me has to tell you that she made Dean’s List (all A’s and B’s) this past Fall and President’s List (all A’s) in the Spring!  In regard to her NF, as I mentioned as a possibility in a prior letter, she did in fact have surgery on her facial plexiform neurofibroma this past December, and although the recovery was way more challenging than expected (!!), she is doing better now.  Going forward she is considering two options – more surgery or back on medical therapy (if you recall she was on chemotherapy/immunotherapy for 3 years during high school).  Either way, it just shows that the issues that affect those with NF never, ever end. Something else that never ends…..Riley’s strength, courage, grace, and ability to live life to her absolute fullest, despite her serious challenges!  I could not be prouder of Riley!

So, as mentioned above, I will, as best I can, continue to advocate for all of those with NF and to (personally) support and fundraise for NF Northeast (www.nfnortheast.org), whose mission is to support NF families, to raise funds for local researchers, and to advocate in Washington DC for federal support; the latter of course is now needed more than ever!!  I may not be ‘Riding for Roo’ at this year’s Coast to the Cure NF Bike Ride, but I am always ‘Rooting for Roo’!  If you too are willing to help, as so many of you have in the past, please use one of the following links – to my Coast the Cure fundraising page (as I registered prior to knowing about Coastal’ s parents’ weekend).  Although there is still no cure or definitive treatment for NF, we can still make a difference for all of those living and struggling with NF!

With appreciation and hope for the future for all those affected by NF,

Michelle