Sunday, December 1, 2013

ELL and the POLP on Facebook group

As most of you know, I tend to be very libertarian when it comes to discussion. I tried for a long time to run this group that way - I played the role of gatekeeper when it came to admitting members, but stayed very hands-off when it came to posts and comments. I had to change that recently in order to clamp down on a few discussions where emotions were starting to get out of hand, but I still tried to stay neutral when it came to discussion topics, in the belief that all discussion was good discussion.

Outside of the POLP group, I still feel that way. Stay away from personal judgements, and I will discuss virtually anything with you without taking offense. Religion, politics, etc - I enjoy a good discussion, even if I disagree with nearly everything you believe. Stay respectful and no topic is off limits.

Because of this, I’ve had a hard time dealing with the ELL topic on this group. In my personal life, I have no use for the subject. I’m quite proud of who my daughter is, and I’m extremely blessed by the friendships we’ve made through the LPA since Caitlin’s diagnosis. Since ELL does not solve any of the medical complications of her dwarfism, my wife and I see no reason for her to go through years of surgery. Still, because I believe all discussion is legitimate, I haven’t censored any conversations that involve ELL.

Unfortunately, every time the topic comes up, things get ugly. It doesn’t matter what I delete or how I threaten, it gets ugly. And honestly, the first ones doing the attacking have been friends of mine, and are generally adult LPs themselves. And some of them, some individuals whose opinions I deeply respect, have felt personally targeted by the responses. I’ve been trying to reconcile my opinions with the feelings of my friends and it hasn’t been making any sense.

But tonight my wife and I were talking about it, and something clicked. Let’s say that this was a group for parents of black kids. And let’s say that some of the parents were black, but more of them were white. And since sometimes it kinda sucks to be black in America, a few of the white parents have decided to find ways to make their kids look less black. They lighten their skin, and straighten their hair. It doesn’t make them NOT black, but it helps them fit in a little better. Nobody crosses the street to get away from them. Nobody keeps a close eye on them as they browse the convenience store. If they accidentally lock their keys in the car (or in the house), nobody assumes they’re trying to break in when they try to get back in.

This makes their life easier. And since it makes them happier, they like to share it with others. They share progress pictures with the skin lightening. They share before and after pictures, so you can see how much whiter they look. All their friends post words of encouragement. “You look fantastic! You're so brave!” “You’re almost as white as your dad, now!” “We are in awe of how far you've come!”

If you’re black, how would that make you feel?

Sound extreme? If you think so, I’m gonna guess that you’re probably average height. That’s not a judgement on you, at all. I’m a pretty open minded guy, and I didn’t see it this way either until tonight. But does it really surprise you that many of the adult LPs in the group feel the way they do about this topic? What those folks are posting about, what they’re encouraging, what they’re so happy about - it’s about eliminating the outward appearance of dwarfism. It’s not solving any of the medical issues created by dwarfism, it’s about undergoing a cosmetic procedure that stretches the shortened bones to gain height, and nothing else. Sure, it’s easier to reach things. But it’s also easy to put them on a lower shelf. I’ve seen homes completely remodeled to accomodate short stature, of course. But that extreme of a step isn’t necessary - plenty of folks shorter than 4’ tall do just fine in an average height world with minimal changes, thank you very much. I’ve seen it myself.

I’m not judging the folks who chose to undergo ELL. I’m friends with one of the average height parents who posts here regularly. Heck, she donated to my LPA fundraising campaign. But I do understand now why this topic causes so much division every time it comes up, and that’s brought me to a decision. As much as I hate censoring topics of any kind, ELL needs to go the way of politics and religion and stay on personal pages.

Tuesday, December 25, 2012

Our 2012 Family Christmas Newsletter

The Mallinson Family Christmas Newsletter:
Because what better time is there to work on Christmas cards than on Christmas Eve??

This year we’re actually slightly ahead of schedule - the last several years we’ve had to aim for New Years cards since we’ve been too late for Christmas! Of course the Mayans had us convinced we weren’t going to need to do cards this year. Stupid apocalypse.

2012 has been a year of big changes for us. As most of you may know, we moved back to Bakersfield this August after spending eight wonderful years in Santa Clarita. Cherylle and I 

had talked about the possibility of this happening for quite some time. She’s always been worried about being too far away from her parents as they age, and most of the kids cousins on both sides of the family live in Bakersfield which means they’re closer to each other here. Also, with work taking me out of country as often as it does, it’s a tremendous help to Cherylle to be closer to family in case there are any problems.

Cherylle had heard through the grapevine that there might be openings at Kern Regional Center, where she’d worked for six years before leaving Bakersfield originally. She forwarded her resume to their HR department and got a response within hours. They wanted her to start immediately! It took 

us a few weeks to get everything sorted for the move, but we managed to get it settled just before the school year started.

That brings us to the second big change. Caitlin started kindergarten this year! It was not an easy task to get our new school ready for her to attend - we’d been prepping West Creek Academy in the SCV for her arrival for the last two years, but only had one week from the time we signed a lease in Bakersfield to the time school started. Fortunately the Buena Vista Elementary staff, along with Special Services staff from the Panama Buena Vista District office, were able to put together an IEP meeting in a very short time, and with just a few adaptations they had a welcoming environment for Caitlin.

The transition to the new school was a little challenging for Evan at the beginning - he’d been at West Creek Academy since it opened and was very involved there, between extra-curricular classes in chess and lego animation, voice and 

violin lessons, and their after-school program. Fortunately he wound up with a really great teacher who prizes reading, so the bookworm fit right in with her class. He’s also made a few friends through a mutual interest in the Pokemon trading card game. The kids also have a great time after school now, spending time with their Aunt Becky and some of their cousins every day.

We’ve been very involved with the LPA since Caitlin was diagnosed with achondroplasia - as parent coordinators for the Los Angeles Chapter, event planners for the 2010 Spring Regional Conference, and as AV coordinators for the National Conferences in 2011 and 2012 - but this year I took it a step further and ran for District Director for District 12 of the LPA, which covers all of California and Nevada. This has given me the opportunity to be involved in a number of decisions regarding the future of the organization, and in October I was able to travel to NYC to participate in a press conference celebrating the launch of a PSA promoting the LPA, which played for a few months on the CBS Jumbotron near Times Square.

In April of this year I dumped my motorcycle on a back road a few miles outside of Santa Clarita. Fortunately for me, a group of hard-core Christian bikers from a biker church in Simi Valley pulled up almost before the dust had settled and got me upright, back on the bike, and escorted me the 6 miles home so I could drive to the ER. One cracked rib, a strained shoulder, and a severe case of road rash were all I got out of it. Unfortunately damage like that is enough to total a motorcycle, so Geico decided to keep the leftovers. I will be replacing the bike at some point in the future, but for now we decided to buy a camping trailer which has seen quite a bit of use. We’ve taken it to Balch Park and to Carpinteria several times - it’s been a great activity for the family!

We asked the kids for contributions to this newsletter. All Evan would say is that he wants a phone when he turns 10. I asked Caitlin what she wanted to say to everybody, and she said “I love you”. Cherylle would like me to make it very clear that she really loves her job :-)

Wishing you all peace, happiness and love this New Year,

Michael, Cherylle, Evan and Caitlin

Thursday, February 23, 2012

The BMN-111 post

Looking back at my stats, I just realized that I only posted ONCE in ALL of 2011. Holy cow, that's neglect. What can I say - 2011 was a busy year. Those of you who are friends on Facebook may have noticed the number of countries I've been to in the last 6 months. It's fun, but contributes to the "super serious blog slacking" :-)

Anyway, I've been getting more intensely involved in LPA affairs lately, and one of the things I've been learning about is the medical research that is focusing on therapeutic treatments for achondroplasia. Obviously that's something I'm very interested in following, since my daughter has achon, as do several of my close friends and their children. One major benefit to this involvement has been the chance to get a lot of information on the current state of such research; I was recently present during a detailed presentation by medical professionals on the new drug BMN-111 which BioMarin is currently bringing to clinical trials.

Earlier this evening, a mom posted on the Facebook POLP page asking if anybody knew anything about BMN-111. I started off posting a comment and wound up writing a term paper. There was enough information there that I thought it might be helpful to repost here as well. So, here's what I know.

There is a lot of medical research being done right now, trying to find a way to encourage the bone growth that is being restricted by the FGFR3 gene. BMN-111 is the first to get close to making it to market. Basically what happens is there is a receptor inside the cells that is supposed to turn on and off to regulate growth. With the FGFR3 mutation that causes achondroplasia, that receptor is stuck in the ON position which causes bone growth to happen in quick spurts rather than slow ones, which has the end result of causing the bone to not grow properly. What BMN-111 is attempting to do is to "dim" the output of that receptor to about 50%, trying to replicate the growth signal in a "typical" cell, as in an AH individual. 
The drug has been tested and proven effective in mice models so far, re-invigorating growth that is slowed by achondroplasia. The next steps are human trials. Phase 1 is testing in healthy average height adults to see if any negative side effects can be identified. Phase 2 will involve testing in children with achondroplasia.

What we do know is this: it does not eliminate the gene for achondroplasia. A person being treated with BMN-111 still has the gene mutation which still has the potential to be passed on to the next generation. What it does in mice models is to eliminate the shortened limbs, tightened foramens, and recessive midface caused by the FGFR3 mutation. Theoretically, this means it would eliminate the need for decompression surgery both early and late in life, as well as surgeries to correct obstructive sleep apnea (tonsillectomy/adenoidectomy for the purposes of opening up the airway, etc). It would also have the end result of increasing the patient's final height. Assuming, of course, that it works in humans the same as it does in mice. We also know that it will only work in patients whose growth plates haven't closed yet. In girls, this usually happens around a year after the first menses; in boys a few years later. 
What we don't know is this: first, whether it will actually work in humans the same as it does in mice. Second, whether there will be any side effects. Hopefully Phase 1 of testing will clear that up, but we'll see. Third, we don't know what it will mean in terms of adult height for children who receive the treatment, largely because the drug hasn't been out long enough for any longitudinal studies, also because it's really hard to predict human growth from a mouse model.

We were approached about a month or so ago about having Caitlin participate in the phase 2 trials. After a lot of discussion, we've decided not to have her participate for now, since there really is no information regarding potential negative side effects, and her symptoms aren't severe enough for us to feel comfortable taking the risks. Other people's situations may be different, or they may have different perspectives - we'll see. There's definitely a lot to think about with this...

Anyway, that's what I know. If anybody has any questions, please feel free to ask, either on FB or here in the comments. I'll answer what I know, and what I don't know I can probably find out through the channels I have access to.

Hope this helps some of y'all to make your decisions!

UPDATE: 12/26/12

Some great friends of ours just posted their opinion on BMN-111 on their own blog. It's great to read this from the perspective of a pair of adults with dwarfism - Go forth and get educated!!