Clouds, May 2010

Clouds, May 2010

Monday, July 8, 2019

Seasonal Recap

Before my blog skips two seasons entirely, I'm here to recap spring...

A small but mighty group of three NJ constituents attended NFXF Advocacy Day at the end of February-- and they sure made a significant difference!

New Jersey was represented by two moms and a seasoned self advocate. One of the moms recently moved out of state but advocated on behalf of NJ this year because luckily there was already good representation from her new home state. Very grateful she was able to join them!

Historically, former Rep. Greg Harper was one of the biggest champions on Capitol Hill for the fragile x community. Not only a father to a son with fxs, but also a founding member of the Fragile X Caucus. The Caucus is a group of Congress members who pursue common legislative objectives. The FX Caucus aims to:
Increase awareness of public & private efforts underway, to treat patients with fx and
Develop therapies and

Identify ways that Congress and federal departments can better serve families impacted by fx

Since retiring in January the role Harper filled as co-chair, alongside Rep. Elliot Engel (NY), had been vacant.

One of the NJ meetings on Capitol Hill was with Rep. Chris Smith, and their visit had wonderfully significant results! Together, this small but mighty group representing NJ successfully helped secure the co-chair vacancy of the Congressional Fragile X Caucus!

An added bonus to this year's Advocacy Day Event-- versus other years, when we've met with staff members from our legislator's office-- turned into this: 
This is the three 2019 NFXF Advocacy Day participants representing NJ, enjoying a photo opp with Senator Cory Booker!

I can't really top that but I will say, fast forward to April, & I attended the NFXF Leadership Summit in Orlando. The meetings took place at the location of the upcoming 2020 International FX Conference. While there was a much smaller number of Chapter Leaders in attendance versus previous years, it was as always powerfully motivating to be together. And if you look carefully you'll notice the guest speaker-- the tall gentleman in the suit, on the end of the back row of the photograph-- former Congressman Harper.

On the heels of a personally trying winter for my family, as Dan & I were faced with the very unexpected curveball of his position being eliminated at his employer of roughly 14 years-- following the last couple of years having been promoted to a manager role-- my trip to Orlando felt like a reboot even despite my usual travel anxiety.

Little did I know it was only the calm before an even bigger storm. Now that Fragile X Awareness Month has begun, I am going to share about our latest challenge with Hayden. I've decided that in the interest of maintaining control over what is shared, when it's shared & how it's shared... it's a perspective that I want to come from me and no one else. But it is also an incredible example of why the structure of the NFXF is so crucial for appropriately supporting our loved ones living with fragile x. Reaching far beyond research to ensure there is adequate awareness, education, advocacy and resources to not only help us through daily challenges... but guide us moving forward.

To be continued...

Friday, February 1, 2019

Safe and Happy

The is the House Chamber where our Members of Congress debate and pass laws.

I share this to think about Capitol Hill and our government, and to visualize the people who sit in those seats and vote on legislation.
Monday, February 25th and Tuesday, February 26th is this year's annual NFXF Advocacy Day. As of January 2019, about twenty percent of the House members are new which means they do not know you and they do not know your story.

Further important to consider is the National Institutes of Health. Yes, that NIH-- the one under the Department of Human Health and Services which is devoted to medical research. In addition we all know Congress established the Centers for Disease Control and therefore they influence regulation of prevention, health promotion and preparedness. What if you were offered the opportunity to help protect NIH and CDC funding?

Any person with an intellectual and/or developmental disability is deserving of quality of life. The opportunity to help restore DDD funding, and push for policies that will provide such opportunity, is crucial for this population and they need our voices to help.

When I experienced my first Advocacy Day many years before I became a CSN volunteer with the NFXF (and even more years before I became NJ Chapter Leader), I did not have beginner's luck. My first year on Capitol Hill I was one of only two constituents from NJ and I seriously felt like I didn't know what the hell I was doing. However... I also learned just how crucial my voice really is and thank goodness the experience only motivated me to return. In the years that followed I witnessed firsthand that NJ typically had quite the show of support! With closer to an average of at least ten NJ advocates, year after year we were a strong group among the 150 or so from around the country. All of us there for a common cause.

Unfortunately this year, so far NFXF AD registration from NJ has dramatically declined. Some families who were previously very involved happened to move out of state... other households (besides mine) have their own extenuating circumstances... and so forth. But one thing that hasn't changed--- we are all anxious about ensuring our loved ones have the best future possible.

Every year that I/we have been to DC, or members of my family have participated in Advocacy Day, my favorite part is when I explain to Hayden why. It's a bit much for me to try and tell him that we join others from around the nation to increase the probability of legal protections being in favor of our children, while also helping to improve the lives of others with intellectual and/or developmental disabilities.
So instead I simply say, "We talk to people to help make sure you will be able to get what you need to have a safe and happy life."

When constituents show up in the offices of our legislators they are the voices from home that are the loudest. Thankfully (to say the least) the NFXF offers us this opportunity to be heard.

You can register here and reserve your room via this link. The discounted room block is guaranteed until Monday February 4th.


Tuesday, January 29, 2019

eastcoast love story

Fresh into 2019 unexpected circumstances sort of forced us to clean out the spare bedroom, so at least one side of the room could once again function as a home office. The timing may seem almost trendy in the wake of tidy Marie Kondo followers, but in our household that's only a coincidence.  Urgency aside, there has been a tiny bit of a positive ripple effect-- one such benefit that other areas of our home have been de-cluttered and cleaned out as well.

Somewhere along the way in either a bag or drawer of cards, invitations, and photos-- (I have a paper saving problem but I'm getting better--) I came across an envelope from my late maternal grandmother. I eagerly reopened it and inside were pages from a newsletter. They didn't look familiar and I had no recollection of why she would have sent them to me. I skimmed it and saw "Fire Safety Program"... "Card Room"... "Meet Your Neighbors"... and then in bold "Gert and Fred Rosner". The next two and a half columns are a mini biography-- up to the last part of the newsletter boasting about The Atriums being the only condos in the town of Palm Beach to receive the prestigious landscaping recognition of a Certified Florida Yard... apparently awarded by the University of Florida and a Palm Beach County Co-op or something (in case you were wondering).

I went back a page and read from the top.

The editor begins, "Are you ever curious how your neighbors chose to live at the Atriums? That's the first question I asked the friendly couple who live at 4H South." According to the newsletter, in 1979 my grandparents had first lived at someplace called the Southgate. They no doubt traveled to Florida seasonally-- that was roughly six years ahead of the devastating house fire that would claim their Maywood Avenue residence in NJ-- the Victorian home that my mother and her three siblings grew up in, which my grandfather's physician practice was also attached to. Furthermore, they kept a NJ residence for many years after the fire when they moved into an apartment.

Back then The (new) Atriums had model units-- the editor mentions my grandparents had been watching the progress of the building when they walked the beach each day. The article says, "After looking at the model bedroom in the North building Fred said, 'Gert you can't come in here, you won't come out!' And thus began life at the Atriums for Dr. and Mrs. Rosner." Some fifteen years later they became year-round residents in the South building. And it really was a beautiful master suite, by the way-- it was on the far end of the condo practically in its own wing.

Next is when the editor gives a little more back story. She wrote, "I'm always curious about where people grew up and how they met. How does a girl from a farm in Queens meet a Brooklyn boy?"
[Farm in Queens?] "Well one summer on the beach at Rockaway, NY sat a very curious third year medical student reading and studying" (and she repeats) "reading and studying". To loosely paraphrase the next part (because I think the editor used a bit too much creative license)... there sat a young lady deciding which boyfriend to choose (supposedly). They went rollerskating on their first date-- something I do not remember anyone ever telling me-- and they married in 1942. The article quotes one of my grandparents saying, "Before that we didn't live together. Nobody did that then." (My money's on Grandma Gert having chimed that in.)

The article continues to say that when the war came Grandma Gert traveled with Poppy for a year and a half before he went overseas. His orders were to report to NOPE, Louisiana but he couldn't find the city on the map-- which turned out to be an acronym for the New Orleans Port of Embarkation. (That's life before computers & Google I guess.) So my grandma had to take a train with my then-infant Aunt to return to New York. There is a side mention of my grandma having made formula and sterilized the bottles, only to see the kind porter put the bottles on ice in a pail he had just used to wash the floors. But "she and her child survived". The editor quotes one of my grandparents, "We've had experiences people don't know." I can imagine. I also remember after Hayden was born, my grandmother saying in conversation that back then breastfeeding "wasn't in fashion".

The article goes on to share that my grandparents eventually settled in Maywood, NJ where Poppy practiced general medicine until 1988. He was a 50+ year founding member of the Maywood Rotary Chapter, served as President, established the local blood bank, and received a medal for his distinguished service. After delivering his 1,000th baby (that I remember him telling me) he began reducing his hours until retiring permanently-- supposedly less than a decade before the newsletter was published. I can not recall for sure but that would mean he was still practicing up until my college years. Interesting!

Then the newsletter gives a little background about Grandma... "In 1959 while visiting a neighbor Gert noticed a painting on china." Short story shorter one day a week she had the children stay at school for lunch and Grandma Gert painted at a studio that was a former chicken coop apparently, kept warm by a pot belly stove. [Didn't realize students usually came home for lunch.]

As anyone who knew my grandmother knows, the china painting continued. Grandpa converted part of the basement into a studio. The article says she would paint until 1 or 2 in the morning! Lastly, the editor mentions my grandparent's love of travel... listing some of their trips including the Orient, Australia, New Zealand, Africa, South America, Panama Canal, Cuba, Europe, Canada, Israel and Scandanavia... none of which (the editor notes) could surpass the enjoyment of Coney Island's famous Nathan's hot dogs. Just before the end of the column, the article mentions their first cruise was aboard the "France" ship to the Caribbean. Grandma Gert said it was "Glamorous" and Poppy said, "Fantastic." But they both agreed if they had to pin down to the very best trip, it was Alaska for their 60th Wedding Anniversary. With 19 of us-- including Dan (we were engaged in November 2001 and the cruise was in July of 2002). We actually bought our wedding bands on that trip, in Juneau.

The concluding sentences explain why Grandma Gert likely sent me a copy of the February 2003 publication...
"What stands out the most is their strong family ties. Having raised four children they agree 'we enjoyed every bit of it.' As granddaughter Cara put it, 'It's not just your soup... your rugelach and stuffing are the best tastes in the world'." I do not remember saying that but I do not disagree!

"Future plans?" the article concludes, "Maybe a river cruise, but right now 3400 is just fine." The editor quotes them, "We made it to the beach."

I miss my grandparents all the time (all four of them). But the envelope was a wonderful little piece of history to stumble upon... and the timing noteworthy itself. Last month would have been Poppy's 102nd birthday, this month is the 14th anniversary of his passing, and next month would be Grandma's 98th They live on in our hearts and our homes-- particularly special that we all have some of Grandma's handpainted china pieces. And my guy of course, who shares a unique genetic link with Poppy. I will always be grateful at least my grandfather knew we had a baby on the way before he passed. I remember telling him the boy name and the girl name we chose, and he loved them both. But I feel luckiest that Hayden was the first to make Grandma a Great Grandma, that he did get to know her, and that he remembers GGG.

They eventually relocated to Maine near my Aunt, and my Aunt and Uncle in Cumberland County. Now having read this newsletter, any time we take Hayden back up there and I see one of Grandma's handpainted plaques on the door of my uncle's beach cottage (approximately a 40-minute drive from their year-round home), I'll hear their voices in my mind. We made it to the beach. 


Sunday, October 28, 2018

the opposite of worse

Facebook is where I learned that two of yesterday's victims had fragile x syndrome. Any article you read describes the two brothers in their 50's as having contagious laughter and gentle spirits. One article in particular, published by USA Today mentions fragile x specifically.

Yesterday was the day when a gunman not much older than myself burst into a synagogue and opened fire, while yelling his intentions to kill Jews.

I visited the website for the Tree of Life Congregation in Pittsburgh. Their home page, unchanged I might add-- as it was before the murders-- says in part:

"We offer a warm and welcoming environment where even the oldest Jewish traditions become relevant to the way our members live today. From engaging services, social events, family-friendly activities and learning opportunities to support in times of illness or sorrow, we match the old with the new to deliver conservative Jewish tradition that’s accessible, warm and progressive."

In times of sorrow jumped out at me. I scroll down on the page and I see a post from a Rabbi Myers that was just published in July. He begins, "Current news recycles at a dizzying pace...". A couple sentences later I see "Parkland students"... with a lump in my throat and my eyes beginning to well up, I only scan the page because in the moment I can not stomach reading too carefully. And then a few paragraphs down... this:
"Despite continuous calls for sensible gun control and mental health care, our elected leaders in Washington knew that it would fade away in time.  Unless there is a dramatic turnaround in the mid-term elections, I fear that that the status quo will remain unchanged, and school shootings will resume.  I shouldn’t have to include in my daily morning prayers that God should watch over my wife and daughter, both teachers, and keep them safe.  Where are our leaders?"

Fast forward three months to the horror that occurred in that very synagogue. Within hours of Saturday's event, when reporters asked Donald Trump (in so many words) if it might be time to revisit gun laws Mr. Trump said, "Well again, this has little to do with it if you take a look. If they had protection inside the results would have been far better."

What a stark contrast to the Rabbi's words, also in the same July 2018 post:
"Our school students deserve better. Immigrant families deserve better. We deserve better."

I haven't exactly taken a survey of who goes to a church or synagogue where there are armed guards posted. Whether during a specific event such as (in this case) a baby naming, or just on a regular basis to protect worshipers during daily service... to my knowledge an armed guard is not the norm. I don't care if Trump was only trying to suggest that it should be the norm, because instead I am trying to put myself in the shoes of the families of the victims. Which I never can. However, I hope they can hear my prayers... and the prayers of any clear minded person in the universe... that your congregation should not under any circumstance take any responsibility for the horror that occurred. Even if the President of the United States himself suggests otherwise.

Where do we as a country draw the line at "if a victim had...[insert any number of ideas]... then the results would have been far better."

I do not know the city of Pittsburgh very well at all. I visited the University when I was going through the college process because I couldn't decide between U Pitt and Ithaca (I'm very aware of the fact that they have next to nothing in common). When I went to visit each of them I liked Pittsburgh but Ithaca was love at first sight. So I don't have any ties to the city of Pittsburgh but I don't believe anyone needs a personal connection other than being human, and recognizing this horror for what it is.

But as a parent of a young man with fragile x syndrome... and as a parent of a young man with fragile x syndrome who just became a Bar Mitzvah less than three months ago, this feels like it hits very close to home.

They were all taken before their time and therefore each of them was too young to go. None of whom could have or should have done any one thing any differently.

To loosely quote part of the Mourner's Kaddish, I wish you all abundant peace in heaven. May G-d shelter each of you with the cover of His wings forever.

In alphabetical order:
Joyce Fienberg, 75 years young
Richard Gottfried, 65 years young 

Rose Mallinger, 97 years young 
Jerry Rabinowitz, 66 years young 
Cecil Rosenthal, 59 years young
David Rosenthal, 54 years young
Bernice Simon, 84 years young

Sylvan Simon, 86 years young 
Daniel Stein, 71 years young 
Melvin Wax, 88 years young
Irving Younger, 69 years young 



Tuesday, October 16, 2018

less than great

Monday, October 15th the ABC Network show The Good Doctor aired an episode involving a patient with fragile x syndrome. The patient was a teenage boy being raised by a single mom.

Seemingly right from the pages of, the Good Doctor himself accurately paraphrased the condition with four key points: it is a genetic disorder (✔) characterized by intellectual disability (✔), behavioral issues (✔) , and hyperactivity (✔).

The show's portrayal of said behavioral issues could be generally accurate-- depends on the individual. And to that point, it is not so uncommon for caregivers to not be able to provide the most ideal care. This episode did touch on the perspective of someone who is overwhelmed and who is not able to maintain the best, safest environment for herself and her son. It is simply not accurate to say that the parent is giving up. What they're doing is desperately trying to help their loved one to grow up... and to thrive. Having her child placed where he is surrounded by people who can help him is not giving up. It is facing reality. It's heartbreaking but it happens. 

However the few times that this character spoke his quick, clear communication was highly unrealistic. The way he addressed the hospital staff instead of his mom to ask if the surgery was going to hurt, in reality, would be extremely unlikely. Later in the episode, after we learn the mom has hurt her hand (it is implied during a situation with her son), and he is beside her as the doctors determine they need to bring her to the OR this time he (the son) becomes overwhelmed. The doctor tries to help and the young guy with fragile x ends up in a fight-or-flight mode and consequently punches the doctor. A short while later they're sitting at a small patio table together outside-- the fragile x patient and the doctor. He offers the doctor an apology for hurting him-- he says he is sorry. The doctor asks him if he has a coping mechanism when he gets overwhelmed. The boy with fragile x looks at the doctor, makes eye contact, and says, "Do you?"

Once again their exchange (albeit short) was not at all typical for how a person with fxs would communicate. Especially someone in an unfamiliar setting surrounded by unfamiliar people... who had to go to the hospital unexpectedly... just had his own procedure and now suddenly his mom is having one too. The entire context would have greatly affected him. The very last thing he would be doing is asking the doctor such a level-headed mature question. If not for the fact that this teenager was carrying around his favorite plush, you might argue it would hardly be obvious he is cognitively impaired.

And then after a brief denial, the mom begins a conversation with her son. They're not only still in the hospital but basically as far as he's concerned what she is about to say is completely coming out of nowhere. While the viewer can not hear the exchange we know it's about finding a different environment for him. He is intensely upset for a moment, yells at his mom to stop it, but then leans in for a hug. This tough-love moment was again, beyond inaccurate.

But the least accurate detail is what the character playing his mom said back at the beginning of the episode. She tells the doctors that her son was a beautiful baby and that he walked and talked... and then after the age of 2 it was as if he started going backwards. I have yet to hear of a case of fragile x syndrome where an individual was actually developing at a typical progression and then suddenly not.

Fragile x is something that people are born with and the delays and many other characteristics are present at birth. Of course more traits become evident as they develop but they will not begin life meeting all of the typical milestones on time, and then stop.

I suppose all in all any fragile x awareness is better than none... and the doctor's character does define it well... but that's about as good as it got.

For more information please visit The National Fragile X Foundation at 


Friday, September 14, 2018


To You,
 You know who you are...

"... after everything you've done
I can thank you for how strong I have become

'Cause you brought the flames & you put me through hell 
I had to learn how to fight for myself 
And we both know all the truth I could tell 
I'll just say this is 'I wish you farewell' 

I hope you're somewhere prayin', prayin'
I hope your soul is changin', changin' 
I hope you find your peace 
Falling on your knees, prayin'...

I am proud of who I am
No more monsters, I can breath again..." 

Kesha, who would not even be anywhere near my top ten list of favorite artists, happened to release this song in early summer of 2017. Some of the lyrics nearly brought me to tears... the timing was too close to one of the most difficult times in our life as a family.

As you know it was nothing that we brought upon ourselves... nothing that any one of us (meaning me, my spouse or my child) could have done differently... nothing that we could have seen coming. None of us-- especially my child-- deserved to have our lives turned upside down. And I may never know the root of it, because we certainly can't blame it on an innocent kid who was born with a genetic disability.

All of these excuses fly around in my mind sometimes... was it a knee-jerk reaction? I don't think so, because then it would have only happened once. Was it unpreparedness? I don't think so, because I could not have possibly handed you more-- or better-- preparation than what I (and others trying to help) had shared with you. Some people tried to offer us comfort by saying you just liked to make your position known. But having lust for authority never made me feel any better back then and it doesn't now. Others suggested plain old inexperience... ignorance... or immaturity. A former colleague of yours labeled you arrogant. As for me when I think about your decisions the word inexcusable comes to mind.

If you never made the decisions you made... if you chose to act as a helper instead of an enforcer... who would have gotten hurt? Who would have reprimanded you for doing the right thing? Would you have regretted choosing kindness over code?

If I had to guess, I would say you have zero idea of the amount of time I have invested to consider your perspective. To try and make myself feel less hopeless... to try and force my brain to find a shred of evidence that there was no other way to have a better resolution. Am I supposed to convince myself that although it was horrific, it simply had to happen the way it did? Is that what you've done?

Someone who happens to know all of us once said they believed-- that one day-- you would have your aha moment. I however feel sorry for you that you missed out on an incredible opportunity, to learn from someone with one of the purest hearts on this planet. And when given a choice you failed to do right by that child, and others, when they needed it most.


To the Other Person Who Didn't Make Anything Better When They Could Have,
You know who you are...

In the interest of transparency I will tack on my parting words for you too. You once said to a group of parents, in so many words, that even though it doesn't always seem like you're advocating you are. You are almost right-- it rarely seemed like you were ever advocating.

You once told me I was an anomaly because I tend to be rational. You were making a majority assumption about something-- do you remember? I said I would never do that, because it wouldn't make sense, because it wouldn't solve the problem. And you believed me that I would never do that but you also believed other parents would. That is when you said I am an anomaly. Clearly it never helped me much but you did say it.

Do you also remember when things were at their worst? You told us that there needs to be some amount of accountability with regards to our son's behaviors. I remember when you said it and I remember who else was in the room. Perhaps your initial refusal to acknowledge that his behaviors are a manifestation of his disability makes you an anomaly. For crying out loud even he knows they are. He is very aware when this is happening to him, and is further painfully aware of the struggle to regulate himself (to stop the behavior). He may be the one diagnosed with the intellectual disability but he is not the one lacking intuitiveness.

You would often have a way of ending curt messages with "thanks and have a great day." Maybe you were being sincere but so am I. With any luck may our paths never cross again.

The legacy you both leave behind is one of relief that you've chosen to move on. With all sincerity, my prayers go out to those who have to work with you in the future. May they understand your decisions better than I ever could.


Tuesday, August 21, 2018

seize the future

I've been saying Hayden is getting very good at showing fragile x just how strong he is, but also in our reality fragile x doesn't go away. I promised myself when I started sharing our journey that I would include some of the good, the bad, and even the scary.

This past Sunday was one week from a most incredible day. We are also approximately one week from when Hayden's annual Giving page closes. As most know, this year our support for the NFXF is in honor of H becoming a Bar Mitzvah. While we have already met and even far surpassed our original goal, the page has no limit. I am certainly in the mindset of continuing to see just how far we can go!

But we do not just choose to support the National Fragile X Foundation because of the fact that Hayden was born with fragile x syndrome. There is an important perspective I have been wanting to share ever since the NFXF International FX Conference in July, and it has to do with helping individuals with fragile x throughout their lifespan.

At some point after lunch yesterday everything turned into a very fragile x sort of day-- didn't start out that way at all. I would loosely sum it up as mom-- and then later the respite helper-- receiving the brunt of the noncompliance, defiance, and overall state of hyperarousal. This is a real term used to describe when the central nervous system of an individual with fxs is in a temporary, heightened state of altered arousal. While Hayden is aware when this happens, he is struggling terribly to regulate himself. He is remorseful after-- from the hitting, cursing, throwing things-- and actually quite disappointed in himself. Thus turning an already difficult situation into something completely heartbreaking. How awful to witness your child going through that and also knowing, inevitably, there are other people in the world who will witness this too. It is one of the absolute worst feelings-- when you're at your lowest and it's essentially on display. And worse, leaves a window of vulnerability when others can completely misinterpret and misunderstand the context or the intent.

For example Hayden feeling overwhelmed... wanting it to stop... someone wanting to help... Hayden not wanting the attention... his biology putting him into a state of fight or flight... having an impulsive reaction and grabbing an everyday object that happens to be on the counter because someone was using it... say for example that object is a regular knife like one you would find in any typical kitchen... and say for example he clumsily raises it, not pointing it at anyone or anything in particular, but in his state of fragile x hyperarousal he sprouts awful expletives (among other things that he doesn't mean)... followed by the nearest individual calmly backing off and firmly stating to put the object down. Hayden listens, is immediately apologetic, but also just scared the heck out of someone. Not to mention this eats him up inside and ruins the rest of the day for him. As a parent you thank the Lord the other individual has the knowledge to understand he never has intent to injure, while silently this unprecedented incident makes you feel like a piece of your heart just died inside.

Something like that.

So back to the perspective from conference that I want to share... and why continuing to support the mission of the NFXF is so crucial...

There are of course many parents in the fragile x community whose children are now grown adults. During a meeting before conference kickoff, one of these parents was reflecting on just how far the community has come. Especially with regard to conferences and having been there from the beginning, this particular parent was able to offer a perspective that not all of us were aware of. The room grew quiet for a few minutes as we listened to what it was really like so many decades ago... the optimism and hope surrounding the discovery of the single gene being responsible for fragile x. And with that, the families who were sure there would be development of a pill (for example) within five years from then... and fragile x would be no more. Ten years at most. One gene. I mean if the scientific community was able to identify this, surely the medical community could develop a treatment or probably even a cure. So they thought. And with that there were some who remained determined and focused and completely dedicated to generating enough resources for research. And helping to allow scientists to continue efforts towards appropriate treatments or perhaps even that cure.

In addition, there were those who paused to realize something else. We still need to think about living in the now. How will families get through the day-to-day. How can we ensure that everyone has access to information-- the individuals, the caregivers, and anyone else involved in the life of a person who is affected by fragile x. The community needs education, awareness, advocacy... and yes, research too. Seize the day as well as the future-- always think forward without forgetting about today.

So if I don't share the good, the bad, and the scary in the now... then what happens when I'm not here to share it. I want as much of our perspective to come from us before it can come from someone else. We will always need experts and resources-- such as those available within the NFXF-- because some of the needs of individuals will continue to change throughout their lifespan. The good news is we will always be able to continue to learn.

Amaaazing what our loved ones can accomplish when we know how to help them succeed.  A week and a half ago was just one example of that. So is it better that we have a cure for fragile x? Yes.
But it is best that we know what to do until then.

For approximately thirty five years now the National Fragile X Foundation has been like a lighthouse for the community of people affected by fragile x, around the world. We are grateful they continue to help Hayden forward.