Clouds, May 2010

Clouds, May 2010

Monday, March 9, 2015

AD in DC for H

Last week Dan & I participated in the 10th annual Advocacy Day (AD) hosted by the National Fragile X Foundation. The two-day event in Washington, DC begins on the first Tuesday in March, & this is when the NFXF provides training for all constituents. The next day, on Wednesday, is when we go to Capitol Hill.

The NFXF works with an agency which schedules all of our appointments for us, & they're all held throughout the day on Wednesday. So each of us meets with our respective Members of Congress (MOC) based on where we live. Occasionally we do meet with an actual Senator or Congressman or Congresswoman, but often times our appointments are with staff members such as Legislative Aides. During the approximate 15-minute meetings, we tell our story, present our "asks", & provide them a leave-behind folder with all the specifics:

Every year the first ask is for continued funding of Fragile X research from the NIH, CDC & DoD. Each budget year as funding is set, our goal is to get our MOC to sign a letter to the Appropriations Committee. The letter asks them to support Fragile X as a priority... & this is how millions of dollars are secured for research funding.

Our second ask is for the co-sponsorship of the T.I.M.E. Act. This stands for Transitioning to Integrated & Meaningful Employment Act. The bill is designed to gradually transition people with disabilities from working in sheltered, segregated employment-- & sometimes for far below minimum wage-- into integrated employment positions with much better wages. 

Our third ask is for the co-sponsorship of the K.A.S.S. Act. This stands for the Keeping All Students Safe Act. The bill addresses unacceptable harmful restraint & seclusion of students with special needs. NFXF constituents have advocated for similar bills in the past & we continue to advocate & hope that our MOC will pass this crucial bill.

Collectively, our asks will not only benefit the community of people affected by Fragile x but far beyond. Even the research funding, considering the overlap of so many other disorders with the various fragile x-associated disorders-- science has taught us that treatments developed for one, can & will benefit many.  

For me personally, this was my fourth time attending AD (although not consecutively). Every year the experience never ceases to be special from beginning to end. This year was no exception as Dan & I were joined by Dr. & Mrs. Irl Rosner from Maine... a.k.a. my Uncle Irl & Aunt Gail.

Having the opportunity to attend the Maine appointments this year was an excellent experience in itself. Every year Advocacy Day begins with a picture of all the advocates on the steps of the Capitol building, followed by a tour inside led by Congressman Harper from Mississippi. His son Livingston has fragile x syndrome & he is a powerful voice for our community. Funny thing, by the way, my hometown is Livingston & my parents had bought a Livingston sweatshirt for Congressman Harper's son. It is green with white lettering, too-- could not be any more fx appropriate! I finally gave the sweatshirt to him this year :)

Anyway our special tour led by Harper includes the Hall of Columns, the breathtaking Rotunda, the Statuary Hall, & most amazing... we get to sit in the actual seats of the House Chamber. It's pretty incredible. One year we also took turns, in small groups, experiencing the view of Washington Monument from the balcony. After the tour, a staff member led us to the underground subway which is another privilege we otherwise would not have access to. 

This year our first appointment was with Senator Angus King's office. My aunt & uncle know him from back home, & it was a wonderful experience to walk into an office & have people know the people you are with. I certainly got a kick out of it-- even some of the young staffers knew my aunt & uncle, because they're the same age as my cousins. Following a coffee reception which they do on Wednesday mornings when the Senate is in session, we met with a staff member to discuss "business". But before heading to our next appointment, the Senator gave us a tour of his private office which was a separate treat in itself.

After that we were off to the House side where we met with Representative Bruce Poliquin. This man is also a friend to my aunt & uncle, & that was about the only reason he saw us that day... because apparently he just had eye surgery (I think the day before) & therefore his staff canceled all of his appointments. Poliquin was so welcoming though, & very receptive... the meeting could not have been more encouraging.

We had three more appointments that day-- two in Maine offices & one for New Jersey. But aside from the obvious detail of how incredible this was to experience Advocacy Day in a different way with my aunt & uncle, I want to share another perspective of why this was so meaningful... 

About a year & a half after Dan & I were married, we went for genetic counseling because we wanted to start a family. We had specific reasons for doing so, which I'll get to in a moment, but the fact is each of us carries 
certain genetic risks common to our heritage. (And approximately two years later we would learn of another type of genetic risk that doesn't "discriminate".)

Following the carrier screening specific to my Jewish ancestry though, we learned I have a gene for one of those disorders. 
Another reason we went to see a genetics counselor was because my niece was born with Down syndrome.

As far as the results of my genetic screening, in order for that particular disease to be passed on, both parents have to be carriers & then there is a 25% chance. However since Dan is Portuguese & Italian, & does not have any Jewish ancestry, the probability was greatly reduced to say the least. 

As far as my niece is concerned, even though Down syndrome is not inherited, my doctor felt we should educate ourselves since it is genetic. Furthermore, meeting with a genetics counselor allowed us the appropriate opportunity to review our family trees to make sure there was nothing else to discuss. One of the many questions they asked us about family history, was if there was any mental impairment.

What a different perspective I had back in 2004... I could have almost giggled at that one...

But truth be told, little did I know, my mother had an Uncle Hymie who was described as being kind of "off". Yet considering circumstances of him being born during the Depression in an orthodox home, on a table with forceps (so I was told), all logic pointed to birth trauma. Hymie had two siblings-- my grandfather Francis & my great aunt Beverly. My grandfather was exceptionally bright, as is my Aunt Bevy, but then there was Hymie. There was a clear difference between him & siblings.

Francis, a.k.a. Poppy Freddy, went on to become a physician after not only graduating high school on an accelerated timeline, but also finishing medical school early. He married my grandmother & they had four children: my Aunt Judi, my Aunt Lois, my mom, & my Uncle Irl.

Their Uncle Hymie passed away when my Uncle Irl was about the same age as Hayden is now. I was told he died instantly in a truck accident-- he worked for some sort of delivery company & he rode on the back or the side of whatever the vehicle was.

Fast-forwarding to present day... the NFXF Advocacy Event is attended annually by parents, siblings, self advocates, or anyone with a big heart who wants to help make a difference. On Tuesday, March 3, 2015 at the NFXF training session the day before Advocacy Day, we were all together in one of the hotel banquet rooms-- tables organized by state-- seated among various constituents present for the same reason. Among those advocating, many individuals with fragile x syndrome-- children & adults alike. A couple of tables away from where we were seated was a young man & self advocate from Missouri. But my Uncle Irl saw this man & said to me, figuratively, "That's my Uncle Hymie." This was the first time in 50 years that he ever even saw someone who reminded him so much of his late uncle.

He paused with his hands beneath his face, lowered his head, & with a closed-mouth smile & eyes welling up... the experience became significantly more than being there for his great nephew Hayden.

One of the interesting facts that gave all of us chills so-to-speak, following Hayden's diagnosis & then consequently tracing the gene back in my family... was the unbelievable detail that my maternal grandfather's first two initials were FX. His full name was Francis X. Rosner... no middle name, just the initial (the idea came from a well-known actor from the early 1900s). Such an unusual combination of letters, though, & I can't believe he not only carried the gene, but literally carried FX in his very own name.

Hayden Zem, by the way, was named for my late paternal grandfather Harvey Zamelsky, whose nickname was Zemsinn. But it's pretty interesting because after we got home from Washington, I suddenly realized that Hayden having an H name turned out to be even more appropriate than we could have ever known. He carries his H but his X makes him unique-- just like someone else.

I hope my great grandma Anna-- who was still around when I was a young child & I do remember-- now knows that her beloved Hymie who she lost entirely too soon, lives on through my son & will always be remembered.