Tis the season
Thank you to everyone who reached out with words of support and advice after last week’s post. I am happy to report that I am feeling much less overwhelmed this week and am taking it all one to-do list item at a time. I am also choosing to ignore the length of said to-do list.
Surprising to absolutely no one, I am almost looking forward to advocating for Anessa in our public school system. Having taken on nurses, doctors, and entire pharmaceutical companies, this Aries is ready to once again stand up in a big way for one of her children. To that end, Miguel had me reschedule the IEP meeting so he could attend – as much because he is Anessa’s father and should be there, but also, I think, so he could reign me in when necessary. Sorry, not sorry.
In the meantime, tis the season when my non-profit involvement and fundraising gears up. For those unaccustomed with non-profit meetings and fundraisers, the bulk of them tend to occur in the spring and fall. Cue all the committee and board meetings, concerts and speeches.
I am writing this from the Undiagnosed Diseases Network Symposium in Boston where I am listening to researchers, clinicians, doctors, and patients share experiences, best practices, and latest technological advancements for the undiagnosed community. Later this evening I will be speaking and the incomparable Tamar Greene (former George Washington in Hamilton Chicago and Broadway) will be performing. Unfortunately, Miguel was already booked so Tamar agreed to step in as wonderful friends do.
For those unaware, Adelaide was undiagnosed for the duration of her life. I enrolled her in the Undiagnosed Diseases Network (UDN) in 2017 (or was it 2018?) and we traveled to Duke University in hopes of finding answers. Adelaide passed away before we got answers and in a hail Mary attempt, we donated her brain to the network. In 2023 we finally got the answer (we think) and if you want to learn more about that I highly recommend you read my book, The Luckiest :)
This evening, I will have the honor of sharing Adelaide’s story and asking those in attendance to financially support the Undiagnosed Diseases Network Foundation (UDNF). Among the responsibilities of the UDNF are to lobby congress to maintain NIH funding for the UDN as well as to the support the undiagnosed patient community.
One of the challenging pieces about fundraising for the undiagnosed community is that so many undiagnosed patients don’t necessarily self-identify as undiagnosed. I know when I was first looking for answers for Adelaide, I wasn’t typing “undiagnosed resources” into my search engine. I was typing in a list of symptoms, looking for answers and specialists. Without a referral from a friend of a friend, it could have been years before we learned of the UDN.
So, if you know someone who has a list of symptoms but no overarching diagnosis (ahem, two thirds of the epilepsy community) – please let them know about the UDN - and the best place to start is through the UDNF website. Diagnoses help grow patient communities, which help move research forward, which is how we ultimately discover treatments and cures.
While I enjoy meeting the wonderful people that make up the undiagnosed and ultra rare disease communities, I still remain eternally grateful to our original epilepsy community. It is this community that supported us through Adelaide’s life and in the grief-fueled years following her passing. Which is one of the reasons that Miguel and I are thrilled to be hosting our third annual CURE Epilepsy takes Manhattan on Monday, May 4th.
In case you missed it, Miguel is bringing the band back together. Ten of the original American Idiot Broadway cast members are reuniting for one night only to sing some of their favorite rock Broadway hits. I don’t mean to brag (actually, I do), but these events are notoriously epic, and should you find yourself in NYC on May 4th I highly recommend attending.
Yes, it is expensive (it’s a fundraiser!), but I do have a discount code for $150 off your ticket: KELLY26. Also, there is an opportunity to win tickets through an Instagram giveaway. If you can’t make the event be sure you follow @BwaySho on Instagram as she will be posting all sorts of content from the event.
It’s going to be a busy few weeks for the Cervantes family both at home and on the road (amidst SO MANY baseball games), but we were made for this. We can’t do it alone though, so this week I need to show a little extra gratitude to Tamar Greene for performing alongside me tonight, and to my Uncle John for watching the kids while Miguel and I are on the road. If I learned anything during today’s meetings it is that we are nothing without our communities.
“Fight for the things that you care about. But do it in a way that will lead others to join you.” – Ruth Bader Ginsburg
Updates and events:
I will be moderating a virtual panel as part of Undiagnosed Day hosted by the UDNF on April 29. Learn more and register here.
CURE Epilepsy Takes Manhattan: Get your tickets or sponsorship opportunities today to see Miguel and his friends from Broadway’s American Idiot reunite to perform punk/pop showtunes to benefit CURE Epilepsy on May 4th in Manhattan! Be sure to use my discount code to get some 30% off your tickets: KELLY26
ID: Kelly wear an orange floral maxi dress and speaking into a microphone. She is standing in an atrium style space with a floor to ceiling glass window behind her.
