???? ???????? ?????? ???????? ???????? ??????????????, ???? ?????????????????????? ???????? ????????????'?? ??????. ??????....
...why?
Well... in a word... Neurofibromatosis.
Neuro-huh? That's the typical reaction when people hear this term. But for 1 in 3,000 Americans, it's a life-altering reality.
When my sister Shruti Shah was diagnosed with NF2 at six years old, our world turned upside down.
Countless hospital visits, five surgeries in seven years, and the crushing realization that NF is a terminal condition without a cure.
We felt isolated, trapped in a bubble of uncertainty that few could truly understand.
But, if there’s anything that I’ve learned over the last few years, it’s that isolation breeds determination. We decided to be the change we wanted to see.
Learning about NF Northeast's impactful work and the condition's significant effect on our military, we knew we had to act.
That's why we met with Congressman Larson's aide.
We discussed the critical need for early pediatric screenings and their potential to change lives.
It's why we founded the Neurofibromatosis Student Alliance - to raise awareness and drive change at the highest levels.
???? ?????????? ???????? ?????????????????? ?????? ?????????? ???????????? ???????? ????: ???? ???????????? ?????????????? ?????? ????????????, ????'?? ?????? ???????????????????????????? ???? ???????????????? ?????? ?????????? ?????? ???????? ???? ????????. ?????????? ???????????? ???? ???????? ?????????????? ?????????????? ???? ????????????, ?????????????????????? ???????? ?????????? ???? ????????????????. ?????? ????????????????????????, ?????? ??????????????, ?????? ???????????????? ???? ?? ????????.
Remember, ???????? ??????????'?? ???????? ??????????????????.
Whether it's NF or another overlooked cause that you believe in, know that your voice matters.
And so, to that end, we step forward together, fueled by hope and determination, ready to advocate for those whose voices often go unheard.
To share their stories, and to craft our own.
You can check us out (at our very much developing website) here: https://lnkd.in/eHg8AFC3.
Thank you so much to Sharon Klein, Anne Patterson, and the team at Neurofibromatosis Northeast for helping us to make this possible! Their unwavering commitment to advocating for funding for NF has been instrumental in driving progress in the field over time.
PS: Stay tuned for more updates on FlowWrite. Some pretty exciting things are happening behind the scenes….??
