Thursday, March 21, 2019

Participants Needed for Goldenhar Syndrome Research Study at Baylor University



Please help Baylor University College of Medicine and Texas Children's Hospital with their study on the genetic origins of Goldenhar syndrome. Richard Alan Lewis, M.D., M.S. needs your help to keep this study alive. Blood samples and a medical history are required of you. Here is more information about what Dr. Lewis hopes to gain through this research. 



"In the past two years, we at Baylor College of Medicine and Texas Children's Hospital have begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.

As part of The Center for Mendelian Genomics at Baylor College of Medicine, I am pursuing the genetic explanation(s) for the Goldenhar Syndrome and related conditions.

Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done.

If you are interested in helping your child and in joining this research program, please contact me. 
Please call my academic office at (713) 798-3030 or email me at rlewis@bcm.edu. 

If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!

Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!"

Wednesday, March 20, 2019

Safe Swimming for Kids with Autism

Spring Break is here and Summer is just around the corner! With outdoor fun on the horizon - and a HUGE pool party at this year's Annual Retreat in Scottsdale, AZ- we wanted to bring you information about swimming safety. Our guest blogger, Angela Tollersons, tailored this article to families who have children with autism. 

Did you know that some people in our CCA community also have autism? If so, these tips are especially important to check out. We welcome these suggestions and hope you can incorporate them into your fun, spring and summer plans. 

Next month, April, is Autism Awareness Month. 

How to Keep Swimming Safe for Kids with Autism

The benefits of swimming for children with autism are numerous. Swimming can improve your child’s cognitive function, provide a positive social outlet, and get your child excited about physical activity. And since drowning accidents are extremely prevalent for people with autism, strong swimming skills can prove to be a powerful tool for keeping your child safe for life.

Build a Foundation

It’s important to make your child’s first swimming experience a fun and relaxing one.

Take things slowly the first few times at the pool so she’s not overwhelmed and try to go to the pool when it’s quieter and bit less crowded than normal. This way she’ll have plenty of space to move around and get used to the water without distractions.

Teach her about pool safety by talking about how deep each part of the water is, showing her where the lifeguards are, and explaining to her that she should only be in the water if you or another designated adult is nearby.

Sign Your Child Up for Swim Classes

But not just any swim classes. An instructor who has been trained specifically for teaching special needs swimming classes will be the most effective teacher for your child. Some of these establishments even seek financial aid from third party organizations in an effort to make your child’s lessons more affordable.

Make a mental note of you and your child’s needs before checking out potential swimming instructors. Do you want him to learn with other children or alone? What learning methods suit him best? Keep these things in mind when choosing a program for your child.

Teach Swimming Safety and Water Safety Separately

A common practice for parents of children with special needs is to make it clear to their child that swimming safety and water safety are two completely separate things.

While your child might understand the importance of swimming safety, she’ll likely only associate those rules with being in the pool you frequent together. What she might not realize is that these rules apply to other bodies of water, too.

This is why you must talk to your child about water safety too. Make sure she knows that she should never go near water without an adult with her. While she already understands this rule for swimming pools and her swimming lessons, she should know that this also applies to other bodies of water like ponds, lakes, fountains, and even large puddles.

When it comes to teaching your child how to swim, safety is the number one priority. Make sure they know the rules before they ever dip a toe in the water and you’ll both benefit from the joy and relaxation safe swimming can bring.

Tuesday, March 19, 2019

30 Stories 30 Faces 30 Years: Charlene "Char" Smith, Executive Director Emeritus




When I first walked into the CCA office on June 1st 1989, I didn’t know what the word craniofacial meant or what the organization would accomplish. For 30 years I have been blessed to be a part of developing CCA and I believe what CCA is today and will continue to be in the future, is very clear.

We are a beacon guiding the way for individuals and families affected by facial differences.

We are SUPPORT. We are HOPE. We are EMPOWERMENT.

We are FAMILY. 


                          Charlene Smith, CCA Executive Director Emeritus

         


Charlene “Char” Smith is one of the founders of Children’s Craniofacial Association. Originally called International Craniofacial Foundation, she was asked to become part of the organization in June 1989. Just four months after Char joined CCA, we achieved our 501(c)3 status as a nonprofit. 

During the first year, Char threw her all into CCA, at one point running the organization out of her garage. Former board member, Tony Davis, comments about Char's work ethic during this time, "
CCA began in Char’s garage when we didn't have an office. Char worked very hard and it was nice to call and hear her dog barking in the background.  We were very grassroots." 

Paula Guzzo, former board member and CCA parent, seconds Tony's thoughts about Char and her ability to go all the way for CCA, "Char literally gave her time and talents freely during a period when the organization most likely would have folded. She was selfless. She had the fortitude to remain faithful to the vision of CCA during lean financial times."
Jesse Bridgin, Starfish Scholarship Award
Winner, CCA Retreat 2016

Along with Jill Patterson, CCA’s now-retired Development Director and Char’s friend, they forged relationships with donors, families, and most importantly Cher, our first spokesperson. In 1990, families went before Congress in Washington, D.C., and met other families affected by craniofacial conditions. Jill says, “And it was not just meeting the other families that made such an impact. It was walking around D.C. and on the mall – when people looked at us or stared, we were in a group. We were stronger together.” After seeing the impact that gathering children and families affected by facial differences had, Char helped shepherd in this now twenty-nine-year-old tradition we all fondly know as CCA's Annual Family Retreat. 

Char shared her talents with us for twenty-seven years fostering nearly three decades of success. What's her secret? Tony shares his opinion in saying, "
Char has a contagious laugh and a smile that makes you feel like you're getting a hug. Her dedication was not for a paycheck, but much more for her compassion and belief in our cause."

Char cites CCA's thirty-year success as an “incredible accomplishment” in the nonprofit world, possible only due to the families that have a “sense of pride and ownership in CCA." A big reason for its success is thanks to her ability to be kind to all, treating everyone with respect. "She's a caring friend who understands the need to make everyone feel they are the most important person to her and the organization," says Paula Guzzo. 

Annual Retreat and Educational Symposium 2018
(Back Row L-R) Jasmine Jackson, Christine Andler, Annie Reeves, Char Smith
(Middle Row L-R) Khadija Moten, Kara Jackman,
(Bottom Row, Center) Erica Mossholder


Jana Peace, former CCA staff member, learned how to enjoy work through the special atmosphere Char fostered in the office. Jana says, "Char had a way of making you feel at home and she immediately made you part of the community. She introduced me to families right away and before I knew it they were becoming a part of my family.  That’s how Char made you feel, like work was fun and everyone was working together to build a bond. We built a strong bond in the office. She always took interest in what you had to offer and what ideas you might have in making things better for the families. She also immersed herself in getting to know you as a person and your family."

The Birthday Club!
Char Smith and Brittany Morton
CCA Annual Retreat 2017

Char knew that the families were at the center of CCA. She approached each interaction in the best way she knew how, with a kind and gentle heart. Jana goes on to say, "What makes her so approachable is her humbleness. To know her gives you a collection of how many times she has learned to reach a family by simply walking along side them.  She has the ability to walk in someone else’s shoes and also lift them to reach their potential." 

Tony mentions another one of her qualities that undeniably lead her to foster the strong relationships she cultivated with friends, families, and donors. He says, "She's always the same whenever or wherever you see her. Ready to go and smiling all the way. For me, Char epitomizes what it means to give without expecting anything in return.”

Annie Reeves, CCA’s Program Director of fifteen years says, “Char is one of those people you just instantly fall in love with. I actually refer to her as my ‘Dallas Mom’ for so many reasons. She has the best sense of humor and can make you laugh like no other, a caring and giving heart, and has the ability to make you instantly feel loved and welcomed. She has taught me so much over the years and I’m still learning from her to this day. Without her sacrifices, hard work, and dedication to our amazing organization, CCA wouldn’t exist today. She is an inspiration to all and I have so much respect and love for this amazing woman.”
CCA Staff Christmas Party 2018


As Executive Director Emeritus, Char spent two years mentoring current Executive Director, Erica Mossholder. Erica says, “Char has a potent mixture of strength, intellect, and simplicity. She never makes things harder than they have to be. She is incredibly resourceful and smart. She is the kind of person that can figure out how to do anything and never saw herself above any task. There is no an air of pretentiousness in her, being around Char is both comforting and riotously fun. I don’t know how she had the time to do everything, but she never looked frazzled or stressed. She always made me feel like I was important and special, from her perfectly appointed luncheons with antique place settings to putting in hours on sweaty afternoons hauling boxes of books from her personal storage in her own vehicle to the CCA office... Char does it all, with a great joke and a smile. She’s a mentor and an inspiration to me.”

The Smiths, Char's Family and Grandkids


These days, Char enjoys spending time with her grandkids, traveling with her husband, and riding her bike along the neighborhood trailhead in Dallas, Texas just steps away from the CCA offices. She continues to attend Retreat and pops by the office from time-to-time to say "Hello," and often pitches in to help our amazing community continue to grow. 

Char's grandkids circa 2016.






Tuesday, March 12, 2019

30 Stories 30 Faces 30 Years: Avery and Carson Cooper


30 Stories: Avery "Honey Badger" Cooper

"Friendship with someone who 'gets it.' Honey Badger has many local friends, but loves her CCA friends, who've walked a similar path." Stephanie Cooper, Mom to Avery "Honey Badger" Cooper and Carson Cooper
Sibling duo, Avery and Carson Cooper, are a force to be reckoned with. Their connection is special and they spread kindness along with their family to all of West Michigan, across the USA, and to all their CCA friends. They are also incredibly successful and generous fundraisers, supporting the CCA Retreat and financial assistance program for families on medical travel. Just last year they netted over $5,000 for CCA! They are continually doing service projects and working hard to make the world a better place... not just for CCA, but for the many organizations they support! We are so proud of them! That's why we're happy to feature Avery - nicknamed "Honey Badger," who has Pfeiffer syndrome - and her SuperSib, Carson, as this month's anniversary story in our 30 Stories, 30 Faces, 30 Years series.

Monday, March 11, 2019

Scenes from a Hospital, A Poem


By Kara Jackman 

Editor's Note: I wrote a lot of poetry when I was in college. Recently, I went through a book of poems from that time. I was fearless in writing, much of it is okay, not great. Stumbling upon this one, I felt I should share it with you. I am not ready to share with The Mighty, but did want to share with you. Hope it resonates with you. 

The masks
monitors
sticky patches on my chest
tubing, nurses
doctors
All the props in place.
The doctors say their lines
Follow the script.
A kiss on the forehead from my mom,
she's playing her supporting role, too.
We've acted these scenes before.

Into the room
onto the stage
filled with a sticky sweet sterile smell

"Put me out, Put me out"
I scream silently.
Juliet must have felt the same.

The nurse takes my hand,
my mother's reluctant understudy.
It's not the same.

I'm slipping away.
The room, lights, swirl, dim
fade
    to
         black.

Scene.