Awareness-- & ultimately education-- is a tremendous part of this message. Generating resources is a crucial component, too.
If you know my son then you know that he is not shy about asking for money-- he is likely to target a man vs a woman, but either way this is a rather unique personality trait. He just really loves his bucks & without hesitation he will ask people (he knows well) for cash. But the good news is a dollar or two will suffice for his level of "greed"... which I assure you only comes from an innocent place. And thank goodness this does not carry over to strangers.
I suck at asking people for money. But it is very important to me to support the very Foundation whose efforts are unparalleled in helping a community that is near & dear to me.
Obviously I have a personal connection to the National Fragile X Foundation. Anyone who has been paying attention regardless when they met us, but especially if you have known us since November of 2006 (our date of diagnosis), or both... also knows that this is not just about Hayden having fragile x syndrome... because fragile x is an inherited genetic condition...
Our journey is also about my late grandfather who was a brilliant man & a retired physician... & who passed away when I was about 5 months pregnant, not knowing that his Parkinson's-like symptoms were actually FXTAS... or fragile x- associated tremor/ ataxia syndrome... common in carriers, especially & more frequently in male carriers of the gene. This is the condition that snuck up on him slowly, later in life, beginning with difficulty holding utensils, & ultimately robbing him of his ability to walk.
This is about relatives who didn't understand why they were experiencing early onset of menopause... or FXPOI, which is fragile x-associated primary ovarian insufficiency... common in female carriers.
This is about the estimated one million Americans who carry the fragile x gene mutation, & who are at risk for developing one of the fragile x conditions-- including approximately one hundred thousand with fragile x syndrome.
This is about the research which will not stop at (only) supporting the community of people affected by fragile x & fragile x-associated disorders.
For example, so far fragile x is the only known single gene cause of autism. Furthermore, people with fragile x syndrome may also have seizure disorder. So without even going into further explanation, please understand these resources can ultimately help people affected by autism, or Parkinson's, or epilepsy... to name just a few.
I hope in the few minutes it has taken you to read this, you're already beginning to have a clearer picture of how broad the impact of this one gene can really be. Yes fragile x is technically considered "rare", but it is important to understand the true prevalence is greatly affected by an unknown number of people who are undiagnosed or misdiagnosed.
So where does the money go?
Well, these resources help support the mission of the NFXF in uniting the community of people affected by fragile x. This is achieved through education, emotional support, public & professional awareness, as well as research advances.
Then there are local families to think about.
Half of all funds raised during the LEK events directly assist families through the Community Support Network. The CSN is the parent volunteer program of the NFXF with Support Groups around the nation. I am Co-Leader for the New Jersey Fragile X Community Support Group. I also helped bridge communication between Atlantic Health & the NFXF, which eventually led AHS in becoming a member of the FXCRC. And ultimately, the establishment of the first fragile x clinic within the state of NJ.
The NFXF is tireless. Whether it be through educational seminars, workshops, social events, awareness opportunities, or outreach... or whether it be through offering scholarships to help families attend the Conference... the NFXF is always looking for ways to offer both immediate support while proactively advocating to help improve the future for all.
So, if you must, pretend I am a cute little charismatic 11 year old who is asking you for bucks... because the 40 year old mother & wife knows that you have way too many charities to choose from throughout the year.
But if you were in my shoes you would do anything in your power to help, too. These kids... these families...