Posts Tagged ‘Hereditary Neuropathy Foundation’
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–
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.
Wow what a fun time we had recently at Fallsmead and Arcola Elementary Schools here in Montgomery County, MD. I spoke to over 300 students at each school and had a blast. At Fallsmead, many of the kids had read much of the book, so they were really into the story and character. I received amazing letters from them, with so many great questions for me! I’d love to answer them all, but I’ll answer the most important one: yes, I’ll come back as soon as the sequel is out. I have to drop off a copy for your library! Then I can answer any other questions you have. Don’t forget, you can always contact me here by email.
I have to send a special thank you to the student at Fallsmead who taped coins to her letter to be donated to find a cure for Charcot-Marie-Tooth disease. I gave that right to the Hereditary Neuropathy Foundation. Thank you so much!
At Arcola, the kids and I had a great time! Of course, I wished I had known it was pajama day! But it was great to meet all of you, with your great questions and enthusiasm for writing. You had great ideas for the sequel–and prequel! I can’t wait to come back and drop off a copy of the sequel in March. Let’s see if it meets your expectations!
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!
Mom With CMT Rides On
Posted on: April 18, 2011
Stories like this one abound, and people are beginning to take notice.
It’s not easy to live with a disease nobody’s heard of. But once word gets out there, through books like Arlene On the Scene and stories like the one in today’s New York Daily News, we begin to learn that Charcot-Marie-Tooth is just not that rare.
What is incredibly common is that people are not being properly diagnosed and treated. It happened to Marybeth Caldarone, who didn’t find out she had CMT until she was in her thirties, despite being unable to walk independently for most of her life. And it happened to Allison Moore, who was given cancer medications contraindicated for patients with CMT, despite having a known family history of CMT.
Allison was training for the New York City Marathon when treatment for an unrelated cancer triggered the onset of her CMT symptoms. Now, ten years later, Allison is training again, on a bike this time. She wears leg braces now to assist with walking, but with help from Dick Traum at Achilles International, Allison is getting ready to ride.
As Arlene says, it’s all about living it. Allison Moore: “This year it’s the Bike Tour. Who knows? Maybe next year it will be the marathon.”
You go, Allison. We’re cheering for you.
Arlene is on the SCENE 