Do you really want a cure?

This isn’t one of those philosophical posts about how sweet and wonderful Monkey is just the way he is…and he is sweet and wonderful! If you don’t know that by now…uh, welcome to BasicallyFX, you must be new!

Anyway, this isn’t that. This is me seriously asking you, each and every one of you, DO YOU REALLY WANT A CURE? If the answer is no, that’s A-OK, I still like you! Lots! But you don’t have to finish reading this one…try this one instead, “The future is?”  It still makes me cry to remember that moment!

For the rest of you, the ones who stay up night after night with red eyes and a broken heart…the ones who read that question, “DO YOU REALLY WANT A CURE?” and thought, “Is this lady on fucking crack1? WHO DOESN’T??”…this post is for you. I’m going to tell you a secret. It shouldn’t be a secret but it seems to be…there will be no cure…EVER…if you don’t step up. Period. There is no researcher or drug company in this world who can find a cure for fragile X without YOU.

Cures don’t just show up out of thin air…cures come from years and years and years of hard work, of study, of experimenting. That sort of thing…is expensive as hell. Seriously, it takes millions and millions of dollars to keep a lab running to find a drug worth investigating in a drug study. Where do those millions and millions of dollars come from? As amazing and wonderful and out of this world as FRAXA and the National Fragile X Foundation are…it’s not coming from them…yes, some is…but in the grand scheme of things, it’s pennies. Those millions and millions of dollars come from…the NIH, the CDC and, surprisingly, the DoD…what do those things have in common? Right, they’re all government agencies. That big, evil force that is stealing all our monies…yeah, that one. All that money coming out of your check that makes you gnash your teeth? That is our funding stream for the cure we so desperately want.

I’m not going to get into politics, mainly because, I like you all too much. I can guarantee we don’t agree on everything, even some things that I feel really, really passionate about. Things that seem so obvious to me that it makes me question the intelligence of anyone who doesn’t see that I’m right. And I don’t want that to come between us because, as I JUST finished telling Monkey’s classmates, we are all WAY MORE ALIKE than we are different. OK? In the ways that matter, we’re alike…we’re human, we hurt, we love, we want the best for our kids…and politics just muddies those waters. SO, NO POLITICS. But the fact remains…our cure is going to come from our tax money.

Does tax money get wasted? Yes! The how and why fall into politics and we are not going there! So! YES, money gets wasted but the fact remains that the vast majority of the research we want and need…it comes from that pot. We don’t have to be helpless though, and I do know a lot of people do feel that way. What difference does one small voice make, right? But we do not have to be one small voice, we are a community of people who…on at least one issue…can speak with one big voice and that gets peoples’ attention.

Every March, the National Fragile X Foundation hosts Advocacy Day. It’s the first Tuesday and Wednesday in March. If you want a cure, you need to add your voice to those efforts. You need to write letters, you need to make phone calls but MORE importantly…you need to SHOW UP. Letters may get scanned and set aside. Think for a minute about your junk mail pile and then think about what your Representative or Senators’ pile looks like. You don’t want to just be one more letter in that pile. Calling is good! It’s hard to ignore a voice on the other end of a line…but you’re not going to get to your Representative or Senators that way either. You’ll most likely speak to a volunteer or intern, an eager, intelligent person to be sure, but you will just get added to the list of things they tell their boss. You don’t want to be just one of a dozen or more items on that list for the weekly meeting. If you SHOW UP in their office, you still will probably talk to a staff member. But that list of names of constituents who showed up that week to discuss an issue or make a request? That list is pretty short, that is the list you want to be on. And in a perfect world, you would do all three because there is no way you get ignored then!

So, Advocacy…it’s very important. I understand that the financial and logistical aspects can make going to Washington an impossibility but there are still phone calls to make and letters to write…and that’s way better than doing nothing! You really don’t have an excuse to not do those two things. This is how we get our Representative and Senators to sign on to fragile X research funding and this is how lab research turns to real world research. No, they don’t always listen, I know. One of our Senators has given us the same brush off letter two years running. He also happens to be up for reelection. I know I’m getting dangerously close to politics here but I think you can imagine how those two generic, brush off letters, containing “as you know” language that was written by a researcher that ALL the Senators and Representatives use2, made us feel. It influences how we perceive him and it influences how we vote. SO, no he didn’t listen, I used my voice and failed BUT I have other options to let him know what I thought of that. You all have the same options.

OY! Now we are finally getting to where I thought I was starting, I really do have an amazing talent for tangents *sigh*

Trials.

When I say trials I’m sure most think immediately of drug trials. The fact is, though, that not all research trials involve drugs of any sort. There is one going on called “Validation of Saliva in the Esoterix Genetic Laboratories Fragile X Assay” basically they do a blood test to see what your fragile X status is and then they collect saliva to prove that their saliva test kit works. No drugs. The the majority, however, are drug trials. There is a lot that has to happen before they get to this stage where they can do human research and prove that it works as they think it will. But when they get to this point, the research cannot move even a little bit forward, to what everyone hopes will be a cure ultimately, if they don’t have volunteers to participate in the study.

No study participants=No data=No cure!

All the lab results or money in the world won’t get us past this.

A few years ago, we met with some people at Seaside Therapeutics because they’re right here in our backyard and they wanted to meet families. When we were talking about what they were working on and what their hopes were for getting this really promising drug out to the people who would benefit from it, OUR KIDS, they thought 2012 would be the year. They planned to have done the research and jumped through all the hoops and finally, finally, get it to the point where you could ask your doctor to prescribe it. Where you could stop by the local pharmacy and pick up a pill (or capsule, or liquid) that helped your kid be the best they can be. Does that not sound amazing??

I left that meeting with a soaring heart.

2012!!!!!!!

Well, guess what? It’s 2012 and we still don’t have a pill, capsule or liquid to help our kids. We are still up night after night with red eyes and broken hearts, watching desperately as time slips though our fingers. It makes me furious sometimes to think about all the wasted time. You know what we’re looking at now?

2015!!!!!!!

ANOTHER three fucking years. That isn’t OK with me and it shouldn’t be OK with you either and you know what? It makes me really, really, really angry with the people holding this up. Not the FDA, not Seaside…it’s US. You and me and every other parent of a child with fragile X out there who isn’t paying attention, who doesn’t know about the studies or who simply isn’t willing to participate.

See how I include myself in there? I’m as at fault as anyone out there. We still haven’t started that study…we have a visit soon…but we’ve dragged our feet and contributed directly to three more lost years. Go team.

No one else can do this part for us, folks. If we aren’t willing to step up and face some potential hardships…travel, doctors visits, possible side effects…it all ends here. So all that money I’ve been going to Washington and begging for? Wasted. USELESS. It’s embarrassing, really. But I’m not owning this all on my own. If you’ve gone and been turned away from a study, you get an A for effort…did you keep looking at other studies? Have you been turned down for them ALL? Do you even know what else is out there? No one can spoon feed this to you, you have to do the work, you have to be willing to sacrifice in the short term for the long term benefit.

Phew! I wish that had made me feel better, I really do, but guess what? These are just words on a page…angry, helpless, useless words on a page. It doesn’t help Monkey. It doesn’t help your kids either. I can cry and yell and swear ALL I WANT and I can’t fix this. I can’t make this happen for Monkey on my own. I’m depending on your, counting on you, to help me help him….help me help your child! I’ll beg if that is what it takes for you to click on this link and make some phone calls:

ClinicalTrials.gov

Then, just as importantly, keep checking that link. Sign up for the RSS so new postings show up in your email. Put a calendar reminder to check once a month. I don’t care how you do it but don’t just think you’ll do it because you won’t. You will forget3! We’re all busy and have a lot on our minds…you need to do something to keep this at the front of your mind. OK? Please? Pretty please? I’ll never swear again4 or I’ll swear at old ladies5…whatever makes you click on that LINK and MAKE THE CALLS.

I know this isn’t easy. I have agonized over this decision to put Monkey in a trial. A small fraction has made it here but most of it has been eating at my brain, giving me headaches, keeping me up at night, giving me nightmares. I know as well as anyone does that this is a huge step. But guess what? If you aren’t willing to take it? Then I can’t get there either. All my agonizing and stress and eventual decision to participate. All my motivation. All my determination. All my hope. Will leave me right where I am now. Angry and frustrated and desperately watching more time slip away.

I can’t speak for everyone but my kid? He deserves WAY BETTER than he’s gotten so far. I love, love, love that people love, love, love him and his hair and his sense of humor and his sweet smile…but that doesn’t do a damn bit of good, people, if you won’t step up here. We are stealing the futures of our own children…of each others children…how can we be OK with that? How can we sleep at night, knowing that there was more we could do and we chose not to do anything? It turns out, I can’t.

How are you sleeping?

 

  1. The answer to that is NO! I am not! Though many will not believe it and I cannot really blame them! []
  2. Guess what guys, we talk, we share those letters, we KNOW when you have not paid attention! []
  3. It is a carrier thing! []
  4. Lie, sorry! []
  5. Since some of you find this hysterical! []

17 thoughts on “Do you really want a cure?

  • October 4, 2012 at 12:54 pm
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    WOW. Love this. We are doing a trial. I have thought over and over about it, pros and cons. And mostly come back to, if not us, then WHO? As with everything else in life, if you personally don’t step up to the plate, then WHO?….with charities, churches, food banks, you name it. “If not you, then WHO?” I feel the same way about all those ASD moms looking to “everything-under-the-sun” to “cure” their child of Autism, but most have not even done genetic testing…..SERIOUSLY? It infuriates me…………

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  • October 4, 2012 at 1:18 pm
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    So very true!! Without people willing to participate, people who step back when it’s time to volunteer or participate, really slow down the wheels of progress!! Everyone is so excited for the results of these drug studies (there’s a bunch of praise the Lords!!!!). But people aren’t stepping up to be involved. Get off your asses folks!! Participate in whatever way you can. It’s like the collective whole is waiting for the few who step up to keep it all going. Write a letter, raise some funds, drug trial, language study, etc. GET INVOLVED!!! Well said Momma!!

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  • October 4, 2012 at 1:28 pm
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    Your timing is impeccable! Just got off the phone with the study coordinator to schedule our first visit and here is your post! Melissa Welin how do you always know what I need to hear?!

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  • October 4, 2012 at 1:28 pm
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    Let me start by saying WTF!!!!!!! I’ve traveled times to Cali with Owen (was 3 when we started, now 4) FOUR TIMES, COUNT ‘EM FOUR TIMES BY MYSELF (and I live in Massachusetts!!!!!. WHY WON’T FAMILIES DO WHATEVER IT TAKES TO HELP THEIR KIDS! Take a risk, take a chance, put yourself OUT THERE! JUST DO IT! Geesh, don’t wait for ‘everyone else’ to fix it – how else will change happen?? YOU do it!!! YOU!!

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  • October 4, 2012 at 1:47 pm
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    Love you Melissa! As usual, you say it so well (minus the cursing)! Okay, we have been told no 2 times, by 2 different people, but Holly’s post about Allison and your words here have convinced me to try again!

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  • October 4, 2012 at 1:48 pm
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    I’ll chime in with only a short comment, lol. I would NEVER have known about the support, the national fragile x website, and the support and trials out there had I not done a search to find out about behavioral supports for my guys. I don’t have any other access to support other than here and now my behavioral implementer. I feel i have a responsibility to EDUCATE people, doctors, etc. about the kind of support needed. I NEAR st. louis, MO. You would think with SLU, Wash U, St. Louis Childrens, and Cardinal Glennon Childrens Hospitals that we’d have an amazing FX support center all in place, with services available, someone to talk to, yet we do not. Honestly, a cure for FX would be just as much amazing, as it would be scary on many fronts. I’m NOT opposed to a cure, not one bit. Just speaking my mind.

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  • October 4, 2012 at 1:51 pm
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    Oh, and BTW, I have been going to Advocacy Day for 10 years, and for the first time this year, I got an email response from one of our senators who has been in office the entire time!

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  • October 4, 2012 at 2:01 pm
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    Yeah, the cursing…Nancy, if you open your eyes just a LITTLE bit wider each time you read one…by the end you’ll look as wild-eyed and crazy as I did writing it!

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  • October 4, 2012 at 2:07 pm
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    P.S. I LOVE ADVOCACY DAY. It’s a day when the politician are forced to listen to big mouth b*tches like myself!!! And it is both fun and empowering to feel like you are ‘really’ doing something real to help your kid!

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  • October 4, 2012 at 9:58 pm
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    WOW! Just read this before go to sleep and might not able to sleep… you are so true.

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  • October 4, 2012 at 11:49 pm
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    I wish they did drug trials in Australia! They don’t have any at all for my sons age group anywhere! I would take him across the country if I could!

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  • October 5, 2012 at 10:28 am
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    I love this. I was just having a moment of anger this morning while driving about a few people that just.don’t.get.it. (This after talking about Stabenow’s re-election campaign here in MI). It’s why we dragged our family to NC for Emma to be in a FXS infant study. It’s why we will probably take her to CA for another study. Why we have Ayden in the 209 trial.

    Anyhow..fantastic blog post. I hope others read this and take it to heart – and then take action.

    Reply
  • October 7, 2012 at 1:55 am
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    I learned about Fragile X on my own. I searched for years – doctors told me all kinds of bullshit. I stumbled across Dr. Hagerman and Louise Gane. Josh was Dx’d at age 11. He’s now 28 and very high functioning.
    We have participated in research but no clinical trials involving meds. I can’t do it. Call me a coward. I’m so afraid of drug interactions. We have lits of allergies and such. He’s doing amazing on Zoloft- why rock the boat?
    I need to be more involved in Advocacy Day.

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  • October 8, 2012 at 8:05 pm
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    Yes I agree I think a cure or something heading I that direction should have been found years ago, and Fragile X should be given as much attention as Austim is given all the time every year, and millions are given to fund research for it. Yes it is a real pain in the fucking ass. People look at me and. I have Fragile X and they think I am lying to them. How could the repeats be 600, and I wasn’t effected more so than I turned out to be. It is crazy. Some one at the conference this year said I should get retested. Crazy! Well all the more power to people who keep fighting for answers.

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    • October 10, 2012 at 4:31 pm
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      Hi Sarah, even people within the fragile X community don’t always understand how it works! It’s really hard for people to understand that once you go over 200 repeats, it doesn’t matter what your number is…your number does not determine how you are or aren’t affected.

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  • October 8, 2012 at 8:08 pm
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    Fragile X should get more or just as much attention as Autism.

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  • October 10, 2012 at 7:26 pm
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    Thanks Melissa, You are right about even people in the Fragile X community not always understanding too. It really is a catch 22 it can go either way with Fragile X. No my number of repeats don’t define me or anyone else with Fragile X either if their repeats are low or high or somewhere in between. Still I think it is really sad that Fragile X doesn’t receive as much attention as is given to Autism. I hope that it will in the future. Thanks for replying, and I like reading your blogs you are a funny person. Your family is great.

    Reply

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