It is a two-day event including training on Day One & meetings on Capitol Hill on Day Two. Day Two begins with a group picture on the steps of the Capitol Building. The constituents are then treated to an exclusive tour inside, including a short address in the House Chamber led by Representative Gregg Harper from Mississippi. His son Livingston has fragile x syndrome.
The NFXF has a Community Support Network of volunteers (mostly parents) from all over the country. The photo on the top left is me with Paula Fasciano of the New Jersey Fragile X Community Support Group (whom I am a new Co-Leader alongside).... The top right is me & my parents with Representative Harper.... And the bottom picture is most of the NJ advocates assembled on the steps of the Capitol building. We were of course advocating alongside well more than 100 other constituents from around the nation. (There was representation from 30-something states!)
Our
group will be addressed by Rep. Gregg Harper and possibly other Members
of Congress in a special tour of the House Chamber. After a short
address from Rep Harper, he will lead a short tour of the Capitol
Building and at this time you’ll be able to take photos. - See more at:
http://www.fragilex.org/advocacy/advocacy-day/nfxfad14/preparing-for-2014-nfxfad/capitol-hill-appointments/#sthash.GL4z7Kv2.dpuf
Our
group will be addressed by Rep. Gregg Harper and possibly other Members
of Congress in a special tour of the House Chamber. After a short
address from Rep Harper, he will lead a short tour of the Capitol
Building and at this time you’ll be able to take photos. - See more at:
http://www.fragilex.org/advocacy/advocacy-day/nfxfad14/preparing-for-2014-nfxfad/capitol-hill-appointments/#sthash.GL4z7Kv2.dpuf
If you have never been to Advocacy Day, you really should go! Again, this is an annual event hosted by the National Fragile X Foundation & it takes place in early March, when Congress is considering the federal budget for the following year. We advocate for support & to maintain funding. Although the experience may sound intimidating, any hesitation will ultimately be outweighed by a complete feeling of empowerment. Everything we need to say (along with how to say it) is discussed during training the day before.
We returned late Wednesday evening... & with work, school, & the regular daily grind resuming the next day, I have yet to finish unpacking.
So yesterday when the annual (non fx-related) Wine Tasting Fundraiser had finally arrived-- hosted by our local Education Foundation-- I felt entirely too tired to go.
I also wasn't sure who I would know there, & I wasn't in the mood for wine tasting. But being a newer member of the Education Foundation-- not to mention I only bought a ticket to the event so I could volunteer-- it would have been wrong if I didn't go. So after dinner I changed into something a bit more presentable than my regular weekend garb, & I headed to the event. Solo.
It
takes place in early March each year when Congress is considering the
federal budget for the following year. - See more at:
http://www.fragilex.org/advocacy/advocacy-day/#sthash.OZRt5ASv.dpuf
It takes place in early March each year when Congress is considering
the federal budget for the following year. - See more at:
http://www.fragilex.org/advocacy/advocacy-day/#sthash.OZRt5ASv.dpuf
It takes place in early March each year when Congress is considering
the federal budget for the following year. - See more at:
http://www.fragilex.org/advocacy/advocacy-day/#sthash.OZRt5ASv.dpuf
By the end of the night, the Education Foundation raised more than $13,000. The various auction items were donated by many local businesses, but also included awesomely creative contributions from teachers. For example a lunch date, bowling, swimming, cooking, teaching gym class for a day, & so forth.
Although I put in & lost a bid for the bowling (we love the teacher who contributed it), I did walk away with a $25 gift certificate to a local jewelry store... & also some leftover wine which was offered to the volunteers.
But my favorite part was talking to some of the parents & staff from school who were there.
Especially a fellow parent of one of H's classmates who appreciated hearing a little about Hayden & fragile x, & commended me for speaking with staff & students every year...
Then there was one of the primary organizers of the event, who knows Hayden from subbing in the Special Ed room... she's the one who nominated him back in the fall for the Random Acts of Kindness Award when he won a Certificate of Appreciation...
So I finally offered her a very belated (albeit heartfelt) thank you for thinking of him, & for nominating him. She said something to the effect of, "I wish I could nominate him every day, I love your son so much!" She also went on to say they have their own thing (with their H names) & when she sees him, he announces she's "in the house!"
I even had a short conversation with the husband of one of Hayden's former teachers... & he told me that he owes Hayden lunch. He said the last time he saw my kid at school, H said they should do lunch... :)
But there was another teacher there who used to be on staff at H's school & is currently placed elsewhere. I know of her... well, we may have met once but I remember her more by name. This woman could not say enough about my son... it was obvious she misses him so...
She last saw him at the annual Craft Fair back in the fall, & as I understand it he was trying to run her carnival booth-- which she loved. But because I was tending to my own table I missed most of the show (Grandma Suzi & Pop Z were following him around that day).
Anyway, she was at the fundraiser last night with her husband & mom who both apparently knew of H... & her mom who never even met me (or my son) nearly brought me to tears, when she said with everything she's heard about him it says a lot about the parenting, too... <3
Among the little chats I had with parents, teachers, & so forth-- despite the fact that most of them already know H, there were many I was only speaking to for the first time. I was also introduced to many spouses & friends with a simple, "this is Hayden Capela's mom".
He really is the Mayor, & now he's turning me into his campaign manager.
But more importantly if all continues to go well, I hope I am only ever famous by association.
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