Kid Speaker From The UK Shares His #ChooseKind Message With Skokie Students

Nicholas is a fine example of someone dedicating his life to make the world a kinder place. And when we say world, we mean it. Nicholas, born with congenital melanocytic nevus, lives in the United Kingdom and recently spoke to students at MCC Academy all the way in Skokie, Illinois after they read R.J. Palacio's novel "Wonder," about Auggie Pullman, a student who faces going to middle school after years of homeschooling.

Nik shared his life story about being born with a facial difference and how he embraces

kindness towards others. He encourages the students in his audience to do the same. As a member of CCA's speaker's bureau, he suggested ways to combat bullying and how he envisions a more inclusive world. A true renaissance man, Nik wanted to share his artwork with the class, but time did not permit. The artwork is a huge part of his message and advocacy raising. Images of his artwork are sprinkled throughout this blog post.

MCC Academy fifth grade teacher, Mrs. Rahman commented, "Nik was a wonderful and inspirational speaker. It was a pleasure to have him in class today. He did a wonderful job in sharing his personal story that tied with the novel "Wonder" we read in class. Nik beautifully shared a message with the class that they need to embrace everyone's differences and be kind."

Melanie Andrews, Nik's mother shared that the class of MCC Academy fifth graders were equally as kind and respectful, ""Nik had said that he felt so happy to answer such educated questions and they were asked so respectfully. Wow what a school. A role model school for us all."

Thanks to past opportunities to share his story and works of art, Nik won the Diana Award, given by the Princess Diana Award charity for acts of anti-bullying, and inclusion for all people in the United Kingdom. Nik advocates for people born with facial differences like himself. Nik was born with a a large congenital melanocytic nevus. His card initiative started with him taking his artworks and placing them on postcards for distribution to "to the public to advocate for kindness and equality. Nicholas considers Princess Diana his role model and lives by her quote ‘do what your heart tells you.’ His heart has encouraged him to spread the message, ‘even if you look different you should be proud of who you are,' says the Diana Award website.

Some of Nik's Artwork
Inspired by characters
from R.J.Palacio's "Wonder"

Thank you MCC Academy in Skokie, IL for choosing kind. Many thanks to Nik for continuing to spread this important message. Clearly a fun and informative time was had by all on this Friday in the first week of June as Nik bridged the gap across the pond!

Learn more about CCA's speaker's bureau program, or request a speaker for your school through our #ChooseKind Initiative on our website at.

Seattle Rare Disease Fair and Summit June 4 & 5 *Agenda Inside*

 

Seattle's Rare Disease Fair and Summit is just around the corner.  Scheduled for Friday, June 4th and Saturday, June 5th, this two-day event hopes to educate and inspire clinicians, patients, and families. Medical professionals from Seattle Children's Hospital will share their knowledge and experiences with you virtually. Many thanks to Carolina Sommer of Born A Hero for coordinating this event and sharing this information with us. 

She says, "The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research with the hopes that everyone who comes knows how they can support accelerated research in rare diseases. The finalized agenda is available below. We are so excited!"  

"We have 50 amazing speakers, great roundtables, legislators and lots of resources and actions to take. There will also be door prizes including, gift cards, and 'Be Kind' hats."

To learn more and register (it's FREE) visit www.rarediseasefair.com, or go directly to the registration page here.


On Friday, June 4, you can look forward to learning more about how Born a Hero works with other stakeholders to establish the Northwest Rare Disease Coalition that includes the Rare Disease Advisory Council (RDAC) in Washington state. Carolina says, "We invite you to learn from world famous gene therapy experts, scientists, and leaders in the rare disease space about what ideas we have for the future of the Coalition. We will host a Rare Disease Policy Roundtable with elected officials. Finally, we will feature insightful scientific talks on orthopedic rare diseases."

And that is just day one of this two-day event. 

On Saturday, June 5th, the focus is on community and advocacy. "The Summit, patients, families and advocates will get to know their local rare disease community, learn about what resources are available, and understand how to take action moving forward," states Carolina. 

Review the agenda below, or go to http://www.rarediseasefair.com to learn more and save your spot! 

Born A Hero and our friends in the Pacific Northwest look forward to seeing you there. 

Growing Into Advocacy

In this piece, originally posted to The Mighty website, Cynthia Murphy writes about her experience living with and advocating for those affected by Treacher Collins Syndrome. Though initially reluctant, Murphy took her advocacy work seriously to help improve the lives of others living with facial differences. Here is how Murphy found her voice as an Advocate for Treacher Collins Syndrome.

By Cynthia Murphy 

I wasn’t born an advocate for Treacher Collins syndrome (TCS), and if anyone had asked me what I wanted to be when I grew up (which few people did), it would have been the last thing to cross my mind. Like others with disabilities, I was just trying to survive and lead a normal life by pursuing my educational studies and working full time.

Later, I advocated for my friends and family because I had a law background and they didn’t. I did legal paperwork, helped get financial aid for students and wrote any number of letters to help any number of people. Yet I still didn’t consider myself an advocate, especially since a lot of what I did was an attempt to buy friendships.

Someone told me recently that she could not connect with others who had Treacher Collins. I think I might have been the same way when I was younger. I didn’t want to be in the Treacher Collins world. I wanted to be in the “normal” one. Unfortunately, the people in that world, most of them anyway, were the ones who judged. They couldn’t understand our differences; and in all honesty, we couldn’t fully relate to them either.

This year, I met two people older than I who have established careers and who are comfortable with who they are. They don’t care if other people are looking at them, and they made me question why I still do sometimes. Although our stories are different, they inspired me. About the same time I met them, I started posting articles and videos on social media. Immediately I heard from hundreds of people saying that I am an inspiration to them. Now, I get it. Advocacy is about awareness. It’s the bigger picture. It’s about relating to others in more ways than one.

There weren’t any books on craniofacial differences when I was growing up. I had no advocates. Thus, I was essentially alone in a sad, depressing world. I wanted to be part of so many things, and I couldn’t. Getting picked last for baseball or group projects in art, history, or drama is a horrible feeling. It happened to me all the time, and I hated it. When I advocate for Treacher Collins, I’m doing it for everyone who has ever suffered those feelings of inadequacy and exclusion. And I’m doing it for me.

Yes, I’m afraid sometimes. And no, I can’t always separate myself from the criticism I receive. When you’ve experienced ridicule, the last thing you want to do is speak out publicly and leave yourself vulnerable to criticism. Still, I feel I have a voice that stems from my experience, and I am committed to making it heard.

No one “kind of” has Treacher Collins — just as no one “kind of” gets bullied, “kind of” gets discriminated against, or “kind of” suffers from insecurities and depression as a result of all those. No one is “kind of” an outcast.

I’m advocating for the person who maybe only has the distinctive eye shape. I’m advocating for the young person facing his or her 30th surgery. I’m advocating for the people who, like me, have to function simultaneously between a sound and silent world. 

I’m advocating for myself, and I’m advocating for you.

Cynthia is not just an excellent advocate. She's also a fundraiser, who hosted a successful wrestling event last Sunday, September 25 in San Jose, CA to benefit CCA and other charities.

A Beauty with A Twist

By Rasheera Dopson 

Hi my name is Rasheera I have a craniofacial condition and this is my story! I was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused me to be born with several facial and bodily deformities—resulting in 101 surgeries in my life.

Growing up and having such a rare condition I didn’t see much of anyone who looked like me. My difference was so obvious and made me feel self-conscious most of the time, which was hard because I constantly felt like I didn’t fit in.  I always compared myself to other girls I would see in school, magazines, and TV shows and because my beauty didn’t look like theirs I felt ashamed.  Instead of embracing my difference, I did everything in my power to hide it. In my mind I just wanted to be normal.

Nevertheless, I came to a point in my life where I grew tired of rejecting and hiding my differences. I was sick of trying to fit into the norm, when I knew I wasn’t ever going to be normal. I knew that deep down inside, even though I didn’t have a face like everyone else, there was something beautiful about me. I just needed to figure out a way to find it; that’s exactly what I did. I began to change the outlook that I had of myself. I no longer saw myself as the girl with no ear, the one with a crooked face, but a girl with something unique. In making the conscious decision in accepting who I am, I began to find purpose in my difference. Instead of dismissing my difference, I began to embrace it. I began to refer to myself as a Beauty with a Twist. I came to the realization that although my face isn’t typical, it is beautiful and my beauty is worth sharing with the world.

So now I call myself an advocate for all the other Beauties with a Twist—fighting against low self-esteem in young women, especially those who are different. Knowing well the battle within between low self-esteem and confidence, I strive to encourage every girl near and far that it’s okay to be you. It’s okay to embrace your difference.  

The day I decided to accept my beauty was the day I let my beauty, my difference, change the world!

Beauty, Art, and Math!

The writing in this post from the United Kingdom's Changing Faces was too good to save for Craniofacial Awareness Month. In this post, Ariel Henley from the United States, talks about art, beauty, and Crouzon Syndrome. We hope this story gives new parents hope, and young adults an excellent perspective on something with which we all struggle.

Happy Reading, and thank you Changing Faces.

https://www.changingfaces.org.uk/viewpoint-mathematics-prove-im-ugly

10 Tips for Raising Eco-Conscious Kids

Today we have a guest post from Amy K. Williams.  Williams is mother of two and a former social worker, specializing in teen behavioral issues. Parenting is her passion and she is especially involved in spreading the word about positive parenting techniques and preventing both bullying and cyberbullying. Today, we have a new topic on our blog - raising eco-conscious kids. As we celebrate Thanksgiving and the holiday season, it's nice to step back from the hustle and bustle and consumerism of it all to refocus on important topics like conservation and conscious living. We hope you enjoy this post!

10 Tips for Raising Eco-Conscious Kids

“Not my circus. Not my monkeys.”

This is a little phrase that many children are taught by their parents. By repeating this we are encouraging kids to mind their own business and not to worry about others. While it might come in handy with quarreling siblings, we might be sending our sons and daughters the wrong message when it comes to the environment.

Seeing Green? Why Children Need To Take A Stand

Global warming and pollution are two serious threats looming over our children’s futures. These issues are very real and will have to be tackled within their lifetimes. Unfortunately, society can no longer ignore the environmental crisis that continues to grow as our populations keep taxing nature. Raising children who are conscious about their environment is vital if we want to leave our children a promising legacy.

We have all heard predictions about the dilemma facing our children, but there is hope. Raising children in our homes provides a great classroom for raising eco-conscious children and instilling earth friendly values. Parents are given unique opportunities to foster a love for miracles our earth holds.

Ten Tips For Raising Eco-Conscious Kids

Thankfully, we don’t have to possess state of the art equipment to carry out this task. By starting at home, we can teach simple techniques and implement fun activities to our daily routines to help children develop the desire and skills to reduce their imprint on our planet.

Listed below are ten suggestions for parents to take advantage of the time we are able to influence our kids’ habits and beliefs:

1. Get outside. If children are playing outside or experiencing nature on a more intimate level, the chances are increased they will value the environment. We don’t have to channel our inner Bear Grylls, but we can take family walks, visit the park, tour the local nature preserve, or go camping.
2. Reclaim family dinners. Family dinners benefit our children in countless ways, but planning meals teach kids about nutrition, clean eating, wastefulness, and how much work really goes into feeding people. Seek out local ingredients, seasonal products, or visit nearby farms to deepen this insight and whip up something good to eat.
3. Take advantage of your local library. Many libraries are great resources for helping families become more eco-conscious by enabling us to check out books, movies, and periodicals without creating more waste. Libraries even offer classes or workshops to help families on this journey.
4. Volunteer. Look for opportunities to pick up trash or clean area parks. We send the message that we care about the world and by working together we can make a difference.
5. Repurpose everyday items. While sorting through the recyclables or cleaning a child’s room, look for ways to repurpose old belongings. Pinterest is a great resource for helping kids see new life in old containers, sweaters, books, and more. 
6. Teach children how to reduce, reuse, and recycle! Have your sons and daughters help sort your recyclables. Look for ways to reduce your trash and begin composting food waste.
7. Start a garden. Whether you choose containers or do a traditional plot, working the soil is a great way to learn about the environment first hand. Allowing kids a hands on lesson in sustainability will impact their health, understanding of science principles, and provide great opportunities to bond as a family.
8. Embrace second hand stores and garage sales. Teach children how to shop for used items before buying new. This saves items from going into the landfill and it allows you to find new treasures or clothes while saving a few pennies.
9. Plan DIY projects that include the whole family so everyone is involved and having fun. This can be as simple as installing weather stripping around windows or learning how to seal gaps with caulk. Children love using tools and display a lot of pride when they complete a task.
10. Challenge your children to make a difference. In an effort to reduce electric bills and consumption, dare your kids to keep the electric bill under a certain amount each month. If they are successful, treat them to the difference saved. For example, if you challenged your family to keep the bill under $150 and the bill was only $130, the kids get $20 to use for a family activity or to split equally. It’s a win win- the kids will take more of an interest in shutting off lights or unplugging devices and you will be able to budget.

By working together, we can show our children how one or two acts, when combined, can make a huge difference. What is one thing you will do today to raise your child’s eco-conscious?