Welcome to our blog! This post is coming from Nicole, Jonah and Flora's Mom. But, you will hear lots of voices here. Parents, Researchers, Doctors, Family Members, Siblings, and maybe even some who are diagnosed with ADSLD--this is a place to hear the stories of our community. So let's get started...
No one sets out in life to start a Patient Advocacy Group like Rare Birds because no one plans to have 'patients' when they have children. Full disclosure: I have no experience in this field! Phew, it feels good to put that in writing. I am learning on the job which is frightening, but at the same time, I have never been so certain I would achieve my goals. Why?
These goals are not for me, they are for my children.
In the three months since I attended the Rare Disease Advocacy Summit hosted by Global Genes, I have been on fire for this cause, realizing no superhero was swooping in to advocate for us, to find treatments, or to help our children live longer and with more good days. No one was coming to save us. While that realization was terrifying, it sparked a determination in me that I did not know was there, especially after living through the trauma of both of my children receiving this diagnosis in 2019.
So who do I think I am? What makes me think I can help Rare Birds take flight?
The Parent Teacher Committee.
That's right, the organizer of bake sales and school dances, the humble public school Parent Teacher Committee. I began going to PTC meetings at Jonah's school in 2022 because his school playground wasn't wheelchair accessible. I turned up to my first meeting, sweaty, nervous, planning to fight for my son's right to play with his peers, and wondering if "mean girls" would shoot me down, or know immediately that I was out of my depth. But instead, I was welcomed and heard.
I learned that PTC's are non-profit organizations that work under a "Board of Directors" structure. They vote, they fundraise, they organize events, they enrich the lives of children and families in the school setting. I didn't know at the time that I was learning to start a Patient Advocacy Group, but I was.
At the same time, I was deeply unhappy with the segregated nature of my son's class. He had very little access to his typical peers, and Jonah is a social butterfly. So I also began to raise my voice to Special Education Administrators, writing to the school board, meeting with Facilities Directors to walk the inaccessible playground, being that 'squeaky wheel'.
Around that time, I met a man from the community who helps create more accessible public spaces, and I started joining in his advocacy efforts. As much as I tried to immerse myself in my garden, and my aquarium hobby, advocacy kept finding me.
In the summer of 2023, I became very depressed. ADSLD is a progressive, neuro-degenerative disorder and we had begun to see regressions in Jonah that I just did not want to accept. It was crippling. I knew that I needed to rest and take some time away from my caregiving duties, but the seizures were so relentless I could not imagine flitting off and leaving my husband to manage everything on his own.
What I could imagine though, was attending a conference. My plan was to see what this 'conference' thing was about, and in the evenings, enjoy peace and quiet and most importantly GET A FULL NIGHT'S SLEEP. I needed to justify my relaxation by also continuing to serve my family. No, you're right. I was not in a good place. But I am very thankful for this stroke of genius.
At the Rare Advocacy Summit I learned from others who have walked this path before. I met scientists and researchers and desperate parents, rabid for a way to save the lives of their children. I was inspired by the parents who still refuse to give up, even if a cure did not come in time for their child. I came out with a fully formed plan for Rare Birds Foundation and the knowledge that what I didn't know I had the good sense to figure out.
So here we are!
Rare Birds Foundation is still in its infancy. But like all new life, it is shining a light into the darkness and giving meaning to the hard days. Thanks for being here.
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