Tuesday, September 12, 2023

Participate in ELSA Advocacy Day at Home or in Washington, DC Sept. 18 &19

Editor's Note: Our friend Becky Abbott from the National Foundation for Ecotodermal Dysplasias shared this update with us about their upcoming advocacy days on September 18 and 19, 2023 for the Ensuring Lasting Smiles Act (ELSA). You can participate from home or in Washington with NFED, other nonprofits, and friends supporting ELSA. Read more below to find ways you can spread the word and raise awareness about this legislation that "would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities" (NFED.org website). Learn more in this interview with Becky on our youtube channel. 

Advocacy Update

We want to share some exciting news! We have made some additions to our Advocacy Resources webpage to help you advocate for the Ensuring Lasting Smiles Act both in-person and virtually!
  • Updated supporting documents like the ELSA One Pager, Patient Stories and FAQs.
  • A list of all legislators with links to their social media accounts to make it easier for you to tag your legislators in your social posts and ask them to support ELSA.
  • Download and print business cards to hand out to your contacts to encourage them to advocate for ELSA. The cards include a QR code that will take them directly to our easy-to-use advocacy web tool. We are currently updating the web tool, and it will be available to use soon! 

Advocate With Us From Home

Whether you are joining us in Washington, D.C. on September 18 and 19 or advocating from home, here are some action steps to take for ELSA.  Tell everyone you're advocating for ELSA! 
  • MONDAY - Take a picture with the "I'm Advocating for ELSA" sign(either printed or on your computer screen), post to social media, tag your legislators and be sure to use the hashtags #EnsuringLastingSmiles and #NFEDOnTheHill.
  • TUESDAY - Contact your legislators via the NFED web tool or your organization's tool and ask them to become an Original Cosponsor of ELSA for reintroduction in this Congress. We are currently updating the web tool, and it will be available to use soon!  
  • WEDNESDAY - Share the story of why you are advocating for ELSA with a picture of yourself and/or your loved one(s) who would benefit from ELSA's passage.


Share the graphic below on your social media platforms to ask them to join us on Advocacy Day on Capitol Hill from home and support ELSA. 

Use these hashtags when you are advocating:#EnsuringLastingSmiles #NFEDOnTheHill

If you are registered for Advocacy Day on Capitol Hill, it is important you attend virtual training on Tuesday, September 12 at 7:30 p.m. CT. You should have received the Zoom link to join the training at the email you used when registering. Please email Becky at becky@nfed.org, if you do not have the Zoom link. Thank you for your continued work for the Ensuring Lasting Smiles Act and those affected by congenital anomalies that would benefit from ELSA!

Check Out Our Day on Capitol Hill T-Shirt

Thank YOU Advocacy Day on Capitol Hill Sponsors!

Organizing and promoting an event like this takes tremendous resources, and we couldn't do it without you. Thank you to Peter and Julie Durand, The Gott-Scott Family, MyFace and Smile Train for sponsoring this fall's event! View All Advocacy Day on the Hill Sponsors.

Saturday, August 12, 2023

CAM 2023 Press Release: The Future is Inclusive: How We’re Celebrating Craniofacial Acceptance

For Immediate Release
August 9. 2023
Children's Craniofacial Association 

CAM 2023: The Future is Inclusive: How We’re Celebrating Craniofacial Acceptance

Children's Craniofacial Association celebrates its 19th Annual Craniofacial Acceptance Month this year and we want to highlight how looking different is a human rights issueFrom FaceEqualityInternational.org: Discrimination and indignities are a daily occurrence for the facial difference community. This is a hidden community that has continued to be marginalized, abused and neglected, throughout history. To this day we do not believe the injustice experienced by this unique community has been adequately recognized or addressed by global society.

This year our theme is “The Future is Inclusive.” We have asked the world to jump on board the #ChooseKind movement, but we want to be clear: being kind is not enough. We want our world to be inclusive.

Understanding our differences is the first step toward acceptance and building empathy for one another. Many of our kids and adults have shared their stories in schools, churches, and civic groups across the country. This year we hope to broaden these opportunities to meet people on playgrounds, in grocery lines, and even behind computer screensbecause advocacy is everywhere! We want to end discrimination and bullying based on visible differences through awareness and adopting the language of other disability advocates. To that end, please help us this month by setting aside a segment on your local radio or television news program for a story about a local child or adult with a facial difference or craniofacial condition. We can help connect you with an advocate near you! If you’ve ever been bullied or teased, you can find an empathetic friend in our community. Together, we can end bullying and discrimination, and teach the world how to truly be inclusive. It is not just enough to be friendly, our families want to be included in local activitiessocial campaigns, find representation in the media, and be accepted for who they are, not what they look like. 

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 5,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.To request free educational curriculum and additional resources, visithttp://www.ccakids.org.

To learn more about CCA Kids and Craniofacial Acceptance Month, local picnics, and other happenings, go to our CAM website for details. 

Wednesday, August 2, 2023

Disability Reads: "Love, Love" by Victoria Chang

By Kara Jackman

I took Victoria Chang’s “Love, Love” on my trip to Annual Retreat in 2022. (Yup, that was last year, and I am just getting around to writing about it this year.) I also brought my Kindle library along with me, too. I don’t know what I was thinking. When would I have time to read? Well, I thought, this was written in verse form, so how long would it take, right? Second, I always like to have a bunch of books around me for comfort when I am away from home. They are like my adult stuffies!

The story is about an Asian-American family told through the perspective of 10-year old Frances Chen. Her sister, Clara, mysteriously begins losing her hair. Her parents focus most of their time on the protagonist's sister, trying to give her vegetables and teas, purchase wigs, and otherwise keep up appearances as Asian Americans living in the midwest United States. This leaves Nancy Drew-loving, and worried, Frances to solve the mystery of why Clara is losing her hair.

Frances has her challenges, too. At school she is bullied, her friend stops spending time with her. She feels very different and very much "the other" in her mostly white elementary school. While times are tough for Frances, she does have one saving grace: tennis. She loves to play, and is quite good. A friend’s coach recognizes her talent, and she begins practicing at the bubble. Soon she must tell her parents about her interest in the game, after being offered an opportunity to play in a local tournament.

While all this is happening, Frances takes lunch in the school library, and begins reading with her friend about hair. They learn all about it, the science of it, what it is made of, and how it grows. At home, she keeps tabs on her sister, Clara, and eventually ventures into her room to learn, discover, and solve the mystery of Clara’s hair loss.

If you don’t want me to spoil the ending of the book, please stop reading here. Frances discovers that Clara has trichotillomania, by reading her diary. Trichotillomania, or hair-pulling falls under the umbrella of obsessive compulsive mental disorders. I, and many like me, some of whom are in our community, struggle with the compulsion to pull our hair. I have had many one-on-one conversations about my lifelong struggle around this issue. I feel this book is a great way to begin some dialogue about it among people in our community.

Frances handles learning about Clara’s trichotillomania in such a beautiful way, without words, but signing letters to her across the table, proving and demonstrating a way Clara can constructively use her body for connection, and to be seen. Frances signs “I K-N-O-W/ Y-O-U/ P-U-L-L O-U-T/ Y-O-U-R/ H-A-I-R.” Clara responds by telling her not to tell her parents. The last page of the book sums everything up nicely. “I still don’t know why Clara/pulls her hair out/I still don’t know/if she will tell my parents/but somehow/I know/it’s not/my secret to/tell/somehow I know that/not even the snow can/bruise us anymore/because somehow/we know/we are each no longer/fully alone.”

In this book, there is so much suffering in silence, and extreme feelings of isolation despite living and being around people. We in the CCA community know how this feels when we are in our home communities, or at school among our so-called peers. Yet, when we are together at Retreat, let’s say, we experience what it feels like to be seen for who we truly are inside, and to know we will never be alone again. This is the message of this beautiful book by poet Victoria Chang. Perhaps, there is no coincidence in me packing this book for retreat last year after all.

Chang grew up in the midwest, too. Though she admits not being very good at tennis, she feels her experiences growing up were similar to Frances. As she writes in her dedication, “To all the bullied kids in the world: I see you. To all the kids who suffer: I see you.” Chang wrote a tremendously beautiful story in verse, about mental illness, family, and belonging. I am so grateful to have read it. I encourage you to do the same.

Many thanks to my colleague at Boston University, Megan Sullivan, for suggesting this book through a syllabus her sister created for a class at University of New Hampshire. You both are truly "my people!"

Thursday, July 20, 2023

Picnic Tips for Success This Craniofacial Acceptance Month

By Kara Jackman

Editor's Note: I am reposting this piece from 2021 on tips for hosting a CAM picnic. I'm planning my first this year, and really needed to review this article, so I figured why not share it again for everyone. Whether you are first-timer like me or  

Believe it or not, as you’re soaking up the summer sun, we are preparing for September! Craniofacial Acceptance Month is just a couple months away. Planning a successful CAM picnic should start now. Here are some suggestions for planning and hosting a top-notch event to raise awareness and celebrate our craniofacial families.

Find A Cool Location & Create Your Guest List

Location location location! As important for a party as looking for a new home, we suggest you find a great space. Consider a local park, beach pavilion, or set up in your own backyard. After a year and some change inside, everyone wants to spread out in the sunshine, so be sure there are plenty of spots for all your guests. It is wise to base the amount of space you will need on the number of people you plan to invite.

State or city parks are great because many are free to use, and provide cool amenities like grills, picnic tables, pavilions, and bathrooms. A playground for the kids is always a crowd pleaser. Be sure to check with your local municipality or recreation department to make a reservation (if that is required and/or allowed), get a permit, and/or pay a reasonable deposit or fee. If it is first come, first serve, you may want a volunteer to go early in the day and stake out the location with some signage and decorations to hold your spot. If possible, include a map and detailed instructions on your invitation, and include a day-of contact number, so people can reach you if they are lost or have something come up.

Invite Your AND Our Friends - Publicizing Your Picnic

CCA is happy to share your picnic location and details with friends in your area. Our database is filled with families you may or may not know. Let us help invite people and publicize your picnic. We are here to help! For instance, if you require RSVPs, you can count on 85-90% of your “Yes” RSVPs to show up. If you do not require RSVPs, it will be harder to estimate a headcount, but the rule of thumb is that roughly only 30-50% of your total invite list will most likely be there on that beautiful day in September.

Pick A Day That Works For All

Some may say the date may be just as important as the location. Choose a day that avoids federal, local, and religious holidays. September is also back-to-school month, so be mindful of fall school events, too. 


It can make or break a party! You have a few options here. For years, we had our picnickers bring their own brown bag lunches. It’s the easiest way to make sure everyone’s needs are accommodated, but you have to notify guests to BYOLunch on your invitation.

If you plan to provide food, first, thank you for your generosity! Make sure you have a wide variety of snacks from the savory to the sweet to keep your guests' mouths watering. Variety also allows your guests to decide what works best for their dietary needs and food sensitivities. (Just make sure you ask the location or look for signs that state what their policies are about bringing food to your picnic place! At the very least, you must assume you’re responsible for proper cleanup and disposal of all food and paper products.)

Another option is to have each family bring food in a potluck style. If you go this route, we suggest you create a Facebook event or Google form for your attendees to sign up for things to bring. You don’t want a party with 15 dips, and no chips! Don’t forget to have someone bring disposable cutlery, plates, and napkins!

Finally, many CCA families have had great luck contacting local eateries and supermarkets to see if they are willing to donate food from their stores. Bottled water is a popular donation item and will keep your guests hydrated on hot days. Many local BBQ restaurants are often amenable to this type of donation, and CCA is proud to have our local chain, Spring Creek Barbeque catering our picnic! (CCA can provide our tax exempt letter for charitable donations and sample request letters. Contact us for more information.)
Organize Entertainment & Activities

Entertainment & Activities

Entertainment is vital for a poppin’ party. From music and crafting to sports and games -- pick what works best for your family and friends. Wiffle ball, an acoustic concert, a talent show, cookie decorating, face painters, a DJ, or painting “Kindness Rocks” are fabulous ways to keep your guests engaged.

In past CAM picnics, friends invited special guests to their events. A local celebrity (sports figure, local TV news personality, high school mascot), or local government representative (mayor, councilman, state senator), first responders (firefighters, police, and EMTs) could really give your CAM picnic the draw it needs to make a bigger impact.

Meet The Press

Invite the press using our CAM press release, and don’t be shy! We encourage you to tell your story. Posters filled with pictures and definitions created by your family about craniofacial conditions will showcase your journey. For an added bonus, share how CCA was able to help your family embrace the craniofacial journey.

Info, Flyers, and Posters, Oh My!

CAM picnics intend to promote awareness and acceptance! Make sure your guests leave informed! Contact Annie Reeves for CCA brochures, signage, newsletters, and other printed material that we can mail to you, free of charge. Folks will be able to bring them home to peruse throughout the year and share with their own teachers and librarians. Craniofacial Acceptance Month does not end in September. If you leave an enduring impression with your picnic, these resources will increase compassion and reduce the amount of teasing and questions in the years to come.

You’ve Got This! Document it with Photos

Have a great time! Take as many photos as possible or consider asking a photographer to volunteer their time for the day! After the big event, please email Annie (areeves@ccakids.com) with a short description of the day’s events, exciting special guests, the yummy food you served, and a few (or all) photos you took, so we can publish them in our next E-Network newsletter, and watch our CCA family advocate acceptance in action.

Friday, June 16, 2023

How To Start (And Have) A Conversation

Editor's Note: Retreat is right around the corner. We are all going to be among friends, new and old. I collected some advice at the request of one our long time Alums, around conversation starters. This blog post shares how to show up for a conversation and what before and during your chat. The two resources I used for this blog post are adapted from works by the inimitable Dr. Marsha Linehan, the godmother of Dialectical Behavior Therapy, and Today Show online contributor, Sarah Fielding. Enjoy and happy reading. -Kara


GIVE Skills (adapted from Dr. Marsha Linehan’s Dialectical Behavior Therapy Skills)  

G - Be (Gentle) - be kind, considerate, 

I - Interested - Make good eye contact, Focus on Staying in the moment, listening

V- Validate - Validating someone else’s story, experience, or emotions is powerful in creating and deepening connection between people

E - Easy Manner - Smile, be calm, light hearted, A light-hearted attitude can help to ease along a conversation. Try including a sincere compliment or giving a little special attention to the person.


What does starting a conversation look like (adapted from Sarah Fielding’s article on the Today show website)

Picture the conversation going positively or imagining you’re speaking to a trusted friend.

  • Tell yourself positive affirmations such as “I am enough” and “I am great” Do this in the morning before you head down to breakfast or before the next activity

  • Find common ground, our common ground: (why are you at retreat? Have you anything fun planned to see while we are in Minneapolis?) 

  • Just say it: “I was looking around the room for someone new to talk to and I got the vibe you might be a friendly person to chat with. I’m _____, nice to meet you.”

  • Consider: What is your intention in speaking to this person? Do you want to greet them, become friendly and create a lasting connection?

  • Once you have greeted the person, asked a couple of the above questions,  scan through this list, take a deep breath and go for more…

  • What did you think of X symposium session/panel/Retreat event earlier? 

  • How are you doing today?

  • What brings you to retreat? 

  • Who do you know here?

  • That’s a nice X you’re wearing.

  • I love your sense of style. Have you always been someone savvy with fashion or did you develop your style over time?

  • Your tattoo/jewelry caught my attention. Is there a story behind it?

  • What’s your most treasured item?\

  • Have you been to Minneapolis before? 

  • How do you spend your days? 

  • Where did you last travel to?

  • Where’s next on your list to visit? 

  • Have you read any good books lately?

  • Have you watched any good shows recently? 

  • Have you listened to any good podcasts lately?

  • Who never fails to make you laugh?

  • What books/ movies/ TV shows do you recommend?

  • Have you ever read X? I’d happily swap with you. 

  • Where did you grow up?

  • Where would you like to visit?

  • What made you laugh this week?

  • If you could be anyone else for a day, who would you choose and why?

  • What’s something you’ve always been curious to learn more about? 

  • What’s your favorite fun fact?

  • How did you get into doing X hobby?

  • What are your goals this week?

  • Have you ever tried doing X activity? 

  • What’s your favorite thing about yourself? 

  • What’s something about you that surprises people?

  • Are you a dog or cat person?

  • Who is the most important person in your life right now?