Posts Tagged ‘charcot-marie-tooth’
Forty-six schools, eight states, 6600 students. The third year of the Hereditary Neuropathy Foundation’s School Outreach Program was our best yet! From our home state of Rhode Island, to our current homes in New York and Washington, DC, and on out to Chicago and Dallas, we met our goal of reaching more students, teachers and parents than ever.
Our school presentations deepen understanding of disability as difference, something that can be embraced rather than merely tolerated or accepted. With our sequel, Arlene, the Rebel Queen, we added the powerful message that every young person has the potential to change the world. In fact, perhaps the young are best suited to lead us to change! With the addition of our Team CMT Kids program, we provide the opportunity for students to join with us in our mission to one day cure Charcot-Marie-Tooth (CMT). Be sure to check out our new video of highlights from this year’s presentation.
Having presented at almost 100 schools since first writing Arlene on the Scene, educators are beginning to spread the word on the classroom potential for the Arlene series. We’ve received positive reviews from the School Library Journal, our Teacher’s Guide for Arlene On the Scene has been revised, and many schools have taken advantage of discounted class sets. Both books will also be assessed this summer for their reading levels.
We believe that awareness is an integral part of HNF’s mission to support those living with CMT. We have found that our children’s books and accompanying school presentations have resulted in increased understanding and support for our friends and family members living with CMT, as well as all of those we know who live with all kinds of disabilities and differences. That would include just about all of us!
We look forward to next year, increasing our reach even further. Don’t forget to contact us if you’re interested in a free school presentation in your area.
Thank you letters–
Team CMT Kids Goes the Distance!
Posted on: May 23, 2013
The biggest Team CMT Kids event of the year featured a group of youth triathletes going the distance to support those who live with Charcot-Marie-Tooth disease.
The Playtri Youth and Junior Teams of Dallas, TX are incredible athletes! At the Hidden Cove Youth Triathlon meet last week, these kids, ranging in age from eight to fifteen, jumped into frigid lake water in the early morn for a challenging swim, then hopped on their bikes for a few laps around the park, rounding it all out with a run to the finish line–no, make that sprint to the finish line. Yes, they had enough energy left to burst through that inflated arch, shaving precious seconds off their total time.
What made it all so moving was knowing that these kids had chosen to support those living with Charcot-Marie-Tooth disease at this event. The team read the book Arlene On the Scene earlier in the year and had learned about the challenges of those living with CMT. They then set out to raise money in the weeks leading up to their first big team competition of the season. Through their efforts and dedication, the Playtri team raised $1275 for the cause! This money will be donated to the Hereditary Neuropathy Foundation to support their efforts to find treatments and a cure for CMT.
We also presented at elementary schools in Dallas in the days before the triathlon event. Seven schools received free author visits, and about 1200 students learned about empathy, disability, and CMT through a discussion of the Arlene books, along with a reminder of the power of writing! Cesar Chavez Learning Academy, Sam Houston Elementary, Truett Elementary, Mark Twain, M.T. Reilly, and Central Elementary all participated in these lively discussions. Titche Elementary even blogged about it! As most who’ve read these books know, Carol grew up in Rhode Island and is an East Coast gal. But Dallas folks sure are friendly! Students asked amazing questions and had great insight into the social issues discussed at the presentations. Thank you to all the media specialists who opened their doors to our School Outreach Program! We’ll be coming back to “the DFW” next year for sure!
Thank you again to the Playtri team and Coach Morgan Johnson! We couldn’t accomplish our mission without your support!
Kizirian Elementary School in Providence, RI has found Arlene On the Scene to be a great teaching tool in many areas. Bonus: it’s a fun read!
After purchasing a copy for all of the third graders, Kizirian Elementary dove right in. Using our free Teacher’s Guide and graphic organizers, students learned about disability and Charcot-Marie-Tooth disease, as well as broader topics such as the power of empathy and the beauty in embracing differences. Kids created their own campaign signs and even made their own Plumpy the Pumpkin!
Finally, for Character Day, students dressed up like their favorite characters from Arlene On the Scene and Arlene, the Rebel Queen!
Arlene
Mr. Musgrove
Arlene
Kechup and Mustard
Kizirian Elementary students, you are a shining example of the power of empathy! You are awesome!
Arlene has been on the road again!
We visited fourteen schools in our home state of Rhode Island in early April. Wow, was it good to go home again! I even went to my alma mater, Sherman School. And there was that red bench, the one Arlene sits on near the end of Rebel Queen when she has a heart-to-heart with Mr. Musgrove. While the bench has been painted, and the seats in the auditorium are now cushioned (cushions! I had to sit on hard wood, for hours, with no bathroom breaks…), my former school has the same warm feel, the same welcoming vibe.
Kizirian Elementary, Providence
We simply had a great time in Rhode Island! From Narragansett to Quidnessett, Coventry to Providence, Warwick to Johnston, we met amazing students at every school. We even ventured into southern Massachusetts, to Braintree and Arlington. Students at every school jumped into a great discussion of empathy, self-image, and the power of activism. Through these conversations, and an amazing video of eight year old Jennifer Keelan climbing the steps of the US Capitol, we learned that one person, one kid, can indeed change the world! We spent some extra time with kids at Kizirian Elementary in Providence–they had great questions! Hope their biographies are coming along. We also want to send a big thank you to Wakefield Books for hosting a book signing with Grace and Marybeth!
Carol, Marybeth and Grace at book signing, Wakefield Books, RI
Margo Toth, teacher extraordinaire, and Carol Liu
We also just got back from Illinois–Naperville to be exact, just outside of Chicago. What a great town, great kids! And I had the pleasure of meeting in person a wonderful teacher I’ve heard about for years, my husband’s fourth grade teacher from Madison, NJ. There she is, still in the classroom, still inspiring young minds. Her second graders had just finished reading Arlene On the Scene and had many insightful questions and responses.
At every school, students and teachers learn about Charcot-Marie-Tooth disease and the challenges our friends and families face each day. They begin to understand why the mission of the Hereditary Neuropathy Foundation is so important. More broadly, we highlight the power of empathy and the beauty in not accepting, not tolerating, but embracing differences.
Still left on the schedule this year: New York, Philadelphia, and Dallas. Be sure to let us know if you’re interested in a free author presentation! Details can be found on our program brochure, and you can email us any time for more information!
While it’s not available in stores quite yet, Arlene, the Rebel Queen is being deemed a good read by some! Children’s Literary Classics gave the sequel to Arlene On the Scene its Seal of Approval, saying it “belongs on every youngster’s reading list.” Read the full review.
We’re so pleased that they liked the book but more importantly, that they understood our point. Well, pointS. We had a lot of them. We wanted to talk to kids about change, and that making change happen can be complicated and risky. As we finish honoring Martin Luther King, swear Barak Obama in as president, and head into African-American history month, let’s be honest–change is huge. It can be frightening. But we can learn so much from looking back on changes we’ve been through, and recognizing the sacrifices made by the leaders of change.
But given that, you–yes, YOU–can be an agent of change. We all can. And should! In our homes, our schools, our communities, even the world. Rebel Queen was written to demonstrate to young readers that they have the power to make positive changes in their corner of the world. Right now!
Finally, we wanted to talk about the interpersonal relationship between Arlene and her friend Lauren. Watching our daughters weave their way through the jungle that is the tween/teen social scene, Marybeth and I wanted to dive right in to these issues–how do friendships evolve over time? How does one navigate through a waning friendship and emerge with self-confidence in tact? And what does difference and disability add to that dynamic?
Well, not to say we answered all those questions. As Mr. Goldberg says in the book, many of life’s biggest questions simply don’t have answers. Asking the question and thinking about it, that’s the point. Arlene isn’t thrilled with this idea, but she rolls with it. Which in the end is what she learns we have to do with change.
Feels like school’s basically out already for the summer, doesn’t it? In our house it does! It’s sunny and 90 degrees here in Washington, DC! So I thought it was a good time to wrap up the second year of our School Outreach Program, see how we did.
Well, we certainly hit our goals! The first year we visited 23 schools, and this year it was 30. And we ventured off the east coast! We went to Los Angeles and had a great time there. We spoke to 4000 students in all, talking about important issues, such as disability, self-image, the value of diversity, and the power of writing. With each presentation, students and teachers learn about Charcot-Marie-Tooth and the mission of the Hereditary Neuropathy Foundation to support those living with CMT. And with each presentation, we highlight the importance of empathy, true understanding of each other’s strengths and needs, so that our classrooms can be bully-free and comfortable places for kids to let their true selves shine.
We ended this fantastic year with a visit to a great school nearby, Olney Elementary. There we encountered something that made us think of foreshadowing. All you third, fourth and fifth graders reading this, if you don’t know what that is, go look it up before you read on. [Insert my lame attempt to whistle…] You done? Ok, yes, foreshadowing. At Olney, we met this great group of kids who call themselves the Recycle Rangers…
Carol got to meet Olney Elementary School’s Recycle Rangers!
…and this made us think about foreshadowing (when an author gives you hints about what’s coming later in the plot). Turns out one of the main parts of the sequel to Arlene On the Scene is that Arlene and her friends start a recycling group at her school, just like Olney Elementary’s Recycle Rangers. So we asked them lots of questions. Authors have to do their research, even when writing fiction!
The sequel is our summer project. We’ve finished a draft, but as anyone who has seen our presentation knows, now the real work begins–the editing! Yes, this will take a while, but hopefully we’ll be able to get the sequel out sometime next year. Working title [insert drumroll]: Arlene, the Rebel Queen. Please, comment away! Olney kids gave it a thumbs up, but tell us honestly–does it grab you?
And don’t forget to contact us and get on the schedule for next year! Presentations are completely free of charge, thanks to the support of the Hereditary Neuropathy Foundation, and we also donate copies of the book to the library of each school we visit. We’re only limited by the challenges of time and geography, so just let us know and we’ll try to work out a trip to your local school!
Boy I wish I were announcing that Arlene On the Scene is about to made into a blockbuster motion picture!
Unfortunately…not yet! I’ve had several students tell me recently that they have “connections” to the industry and will put in a good word for me. That’s terrific! I think these kids really just want to see Plumpy rolling down the hill, flattening Joey and his buddies! If you don’t know what I’m referring to, you really must read the book! 🙂
But we did make it to sunny CA. Only to find it 20 degrees colder than on the east coast! What gives?
I want to give a big shout-out to Dahlia Heights and Rockdale elementary schools for being such great audiences and great listeners. It was so great to meet you!
Now, it’s on to Rhode Island. Oh, you know I have to go back home again! We’ll visit eight schools in RI in mid-April, talking to kids about differences, disability, and the power we have to change the world!
Check out our School Outreach Program: we’ll come to your school for free and donate a few copies of Arlene On the Scene for your library! We discuss how it’s really our job, using our empathy skills, to create a safe place for all of us to be ourselves, our true selves, including difference, disability, whatever you bring to the group. It’s all sponsored by the Hereditary Neuropathy Foundation to raise awareness of Charcot-Marie-Tooth, which is the condition that “Arlene” deals with. Along with the more tricky issues that a fourth grader has to face: friends, teachers, homework, parents, big brothers…
A recent survey tells us that kids with autism are much more likely to be bullied. The new movie, Bully, coming out this week will bring needed awareness to this important issue. We hope to continue to contribute as much as we can to this awareness effort, school by school, student by student.
Let us know if we can come to meet you–contact us today! We just need a few schools in the same general area, and we’ll be on our way!
The Dark Side
Posted on: January 16, 2012
I read a comment today written by someone with Charcot-Marie-Tooth, and it stuck with me. She was trying to talk about the sense of loss she feels with each passing day that brings a little less movement, a little more pain, a little less independence. The response to her was: it’s not “loss,” it’s change.
She didn’t agree, and went on to vividly articulate what this loss feels like. Sure sounded like loss to me. Problem is, she points out, that because of her own inner strength she figures out a way to cope with this loss, and then all of a sudden people admire and applaud. She’s become an inspiration, and the loss is replaced by change, which I dare say is an effort to normalize it. As the writer points out, until you have lived with your independence being slowly stolen from you, day in and day out, don’t label it, please.
Which brings me back to something my friend/co-author Marybeth and I have talked about a lot, something that I’ve dealt with often in my work and that I have talked about here. We all seek to cope with life’s pitfalls, and in doing so we all try to find the silver lining. Marybeth tells me, though, about the dark underneath that silver lining–the anger, the frustration, the disgust. And she’s one of the most spiritual people I know. It’s not about denying there’s a silver lining, or not acknowledging our blessings along with our burdens. It’s about standing in the dark for a minute, for ourselves or with a friend. Uncomfortable and frightening as it is, it serves a purpose.
I was talking with a young client of mine today. He’s been in foster care a while and has had quite a difficult time of it in his eight short years. “That’s cuz I’m bad,” he said. “I’ll always be bad, everybody in my family is bad, we just bad people.” The “You’re not bad!” response almost made it past my lips before I had enough sense to shut my mouth and wait a minute. I paused as long as I could. Just tried to sit in the dark a moment. I asked him why he thought he was bad, and he went on to express his anger–no, make that pure rage–at me, the judge, the social worker, everyone that had anything to do with his situation. And we sat in the dark some more. And frankly, he seemed relieved.
Now, he’ll go on and continue to cope, continue to perform to the applause of all of us adult onlookers. But I’m glad I followed him into the dark, just a few steps anyway. That underside is indeed dark, scary, and probably lonely. Those traveling it could probably use a little company, and not always just to be led out.
Hey, it’s Arlene again. Yes, I’ve been gone all summer. I mean, not really GONE, but you know, you and I haven’t really talked in a while! Doesn’t it always seem to go that way? We say let’s stay in touch over the summer, but then we go to camp, Mom and Dad drag us off to see cousins and family, we watch a whole lot of TV, whatever.
But I did read some great books too! I read the new Diary of a Wimpy Kid, and to get a little more serious, I read Esperanza Rising. That was good. I also read the Guiness Book of World Records because one day I will set one. Haven’t decided which one yet. I know it’s NOT going to be longest fingernails, because I tend to bite them.
But now it’s time to go back to school. Part of me is really excited. The other part is…I don’t know…nervous. Just like last year. This year my braces aren’t new, but still, it’s stressful, you know? I read this thing online that made me laugh, but it was also very true. Here, you can read it yourself, but come back to this page so we can finish talking.
So this girl is a little older than me, but she is talking about going to school with a disability, an “upper limb deficiency” to be exact. I had to ask Mom what that meant. As far as we could tell, sounds like this girl has only one arm, or at least only one hand. Now that seems pretty intense to me.
But then again, I have Charcot-Marie-Tooth, and that sounds pretty intense to most other people too.
But what made me laugh is that when kids asked this girl what happened to her arm, she said it got flushed down the toilet! Crazy!
People do ask funny questions when you’ve got a disability, and it helps to have a few of those funny answers handy when you need them. But this girl talked about more serious stuff that is really true, things that make me a little nervous walking back into school this week.
Things like, the staring. And I’ll probably get some funny questions too. I’ll get new teachers who don’t know me and try to do everything for me, instead of letting me choose when I need help and when I don’t. And I’ll get friends who get to know me so well that they forget about my disability, which is great, but then they run down the stairs ahead of me, never stopping to wait.
It’s all a big swampy mess of things and feelings that are harder to push through than say…hanging around the house this summer. I’ll make it though. No doubt. In fact, I’m sure I’ll have a blast. Just gotta get psyched up for it.
Post a comment, tell me about what went on for you when you started school this year. I’d love to hear about it!
Listen to the Voices
Posted on: April 2, 2011
We were incredibly moved by the voices of those living with Charcot-Marie-Tooth disease, as recorded by the New York Times Health Section. We need to continue to raise our voices until everyone knows what CMT is, everyone understands the urgency, and we all join together to maximize the quality of life for people living with CMT.
Matthew Downing puts an orthopedic brace on the foot of his son Matthew, 5. Both have Charcot-Marie-Tooth, a progressive neurodegenerative disorder.
Arlene is on the SCENE 