Tuesday, February 26, 2019

Christine Visits New Jersey Girl Scouts, Spreads Kindness


Christine Clinton shared her "Wonder" story with a group of New Jersey Girl Scouts last month. She delivered a Powerpoint presentation on how the girls can choose kind and accept people with facial differences like Auggie Pullman, the protagonist in the book "Wonder." 

Christine brought CCA's Wonder #ChooseKind wristbands for the girls, encouraging them to wear them and take a photo in places where they are actively being kind in their daily lives. 

Thank you, Chrissy, for sharing your message with these scouts. 




Girl Scout Troop Leader handing out
#ChooseKind bracelets.




New Friends with Chrissy Clinton!

Wednesday, February 20, 2019

Girl Scouts and San Jose Rare Disease Community Team Up For Walk






San Jose, CA is hosting a walk to raise awareness about Rare Diseases on March 2nd at Martin Murphy Middle School from 9AM - 12PM. Everyone can look forward to food trucks, face painting, t-shirts, and fun! Register and learn more about the walk here. The Girl Scouts will be on hand, as well as family representatives, from CCA! The girl behind the walk, is Mikela. On the website she writes why she decided to host this walk:

"My name is Mikela, and I am a Girl Scout of 12 years. I also have VACTERL Association, a rare disease that affects 1.6 out of every 10,000 live births. Through my experience with VACTERL, I've realized that there is not a lot of awareness for a lot of rare diseases. I am currently working on my Gold Award with the Girl Scouts, which is aimed at raising support and awareness for rare diseases (especially VACTERL). My Gold Award includes San Jose's First Annual Walk for Rare Diseases, a website with support and awareness for VACTERL (with other information about other rare diseases), an ambassador program, a patch program for Girl Scouts, and making and donating a good news book to donate to hospitals."

You can find us on Facebook, Instagram, Twitter, and Snapchat as @sjrarediseases."


Mikela hopes to build a website to educate people about VACTERL and other rare diseases. The money raised through registration and donations will support her desire to build a website. The Girl Scouts and the Rare Disease Community hope this walk will be a fixture for interested San Jose-area families.

Tuesday, February 19, 2019

Helen Webb-Prosser Shares Her Wonder Story at Maine Church

Editor's Note: I just loved this Wonder Wednesday story shared with us by Amy Webb-Prosser of Maine. She writes about her wife, Helen, presenting at their local church, West Scarborough United Methodist Church. Amy shares about the pride in her committed, Methodist congregation that is truly living the Methodist slogan of open hearts, open minds, open doors in everything they do. So without further ado...here is Amy's reflection about Helen's "Wonder" presentation. 


The event was held at West Scarborough United Methodist Church on Route 1 in Scarborough, Maine (where I am music director.) It evolved from a conversation Helen had at coffee hour with a group of women from the church about her experiences and the book "Wonder." A few of the women then ordered the book and read it, and suggested that she share her story with the church. So the Worship and Arts committee sponsored a showing of the movie Wonder last Saturday, January 12th, at 1PM in the sanctuary of the church, followed by a presentation by Helen, with questions afterwards. Helen had done the same presentation for the middle school where she works in coordination with their Wonder unit. 



There were about twenty people in attendance. Helen’s presentation was called My Wonder Story—talking about what it was like growing up with Pfeiffer Syndrome, and how it was similar to Auggie’s story. She also talked about how people with physical differences prefer to be approached, which fits in with West Scarborough UMC’s mission to become a more welcoming congregation.

It was very well received, and I actually had someone come up to me and tell me that they thought the congregation would be more comfortable asking Helen about her differences and experiences thanks to the presentation.




Monday, February 18, 2019

Time of Our Lives: The Andersons Find their Tribe at St. Louis Retreat



Six years ago, when Nathan was three and Owen was seven, Owen saw a video of an older brother that wanted to help his younger brother who was paralyzed. This older brother held a 5K for his younger brother, so Owen decided that he wanted to do his own fundraiser. We had heard of CCA through Facebook, but we had never really looked into it until that point. Once Owen's fundraiser was rolling, it became something bigger than we imagined, and we ended up, that year, at our first retreat in St. Louis in 2013. 

As soon as we walked into the hotel and felt the presence of so many families just like us, this calm and sense of belonging washed over us. I found myself just staring at everyone, which I know is such a "no-no" in our community. But I just couldn't stop, because I was beside myself with awe and excitement of what we were about to be involved in. Before the retreat officially began, we found ourselves at the Hard Rock Cafe, and there were several families there who we had not officially met yet. 3-year old, Nathan, saw a young man with a BAHA. He pointed from across the restaurant and declared, "Look at that boy! He has a BAHA like me!" At 3-years old that was the first time that he had made a connection like that, and the excitement and friendships that he made that weekend with a small group of boys kept him going the entire weekend. Thanks to Owen and his desire to help, he encouraged us to become involved in something so much bigger than our family and small social 
circle.

As each June approaches, our family has something to look forward to as Retreat comes closer. Every year Nathan and Owen continue to make connections, knowing that they is one of such an awesome and amazing group of people. CCA gives Nathan, Owen as a sibling, and David and I as parents somewhere to plug into each year. The retreat re-energizes all of us to prepare for the challenges and blessings of the year ahead. 

Friday, February 15, 2019

Time of Our Lives: Memory of A First Retreat





CCA celebrates its 30th birthday on February 24th. Each member of this ever-growing family has a story to tell. Some have been documented in the 30 Stories, 30 Faces, 30 Years campaign. Others, we will share through the series we call "The Time of Our Lives."
CCA has a unique way of touching our hearts. In an effort to include even more voices of the people that this organization touches, we hope you take a moment out of your day to read how we have had the "Time of Our Lives" over the last 30 years together.
Our first entry is from Deena Dyson and her daughter's first Annual Family Retreat experience. Take a moment and enjoy!
"Before we took our daughter, Teresa (now 12) to her first retreat at age 5, we didn’t yet know how aware she was or wasn’t about her different appearance. We got an answer quickly when we all met Meg Storie. While being introduced, Teresa beamed. With a huge smile and while pointing at Meg, she exclaimed, “You have my face!” CCA has had our hearts ever since." Deena Dyson, Mother of Teresa

#WonderWednesday: Kalyssa Connects with Northern California Fifth Graders




Kalyssa Aumann spoke at Truckee Elementary in Truckee, California for her debut "Wonder" presentation in front of over 100 fifth graders after they read R.J. Palacio's New York Times Bestselling novel.

















Truckee Elementary chose the book about Auggie Pullman a child born with a facial difference that enters middle school after being home schooled, because they wanted to "increase awareness of the power of words and the power of kindness."

One Truckee fifth grade teacher said, "Kalyssa was adorable. She had many slides and she was very personable. She connected with a lot of people. Overall, she was sensational." Such a rave review for her first time telling her story in front of 100 children!




Thursday, February 14, 2019

Kids First Data Center Focuses on Genetics Researcher Dr. Marazita



Read about Dr. Mary Marazita of University of Pittsburgh's research on human genetics around craniofacial conditions and oral disease. The Kids First Data resource center puts the spotlight on Dr. Marazita's research this month. 

She says, "I am very happy and proud to be part of Kids First. Kids First is a unique opportunity to gain a deeper understanding of the genetics of orofacial cleft birth defects from my studies, and, importantly, to compare the results from the facial birth defects to the results for the numerous other birth defects included in Kids First."


Kid's First Data resource center reports that Dr. Marazita's research focuses on "on the human genetics of complex traits, primarily facial birth defects (including cleft lip, cleft palate, and other craniofacial anomalies), and oral disease (such as caries, malocclusion, and peridontal disease). She has more than 290 peer-reviewed publications, and substantial grant support, mostly from NIDCR. Her studies have led to collaborations with colleagues across the USA and in more than 15 other countries, representing all continents except Antarctica.


The Kids first Data Resource highlights investigators and researchers on birth defects and pediatric cancers. Their work is admirable. Find more information about Dr. Marazita's work at the Kids First program on our website, Facebook and Twitter today!

Become a member of the Kids First Data Resource portal to gain access to genetic data, scientific research on craniofacial conditions. If you want to learn more about why and what happened genetically and you are science-minded, this is the website for you.

The Kids First Data Resource Portal is now live! You can start exploring and testing this new resource TODAY! Visit https://kidsfirstdrc.org/ and click on "JOIN NOW" to create your account and help make this a valuable asset to your community.

To stay up-to-date on the latest foundation and investigator spotlights and news from the @kidsfirstDRC, sign up for our email newsletter here: https://mailchi.mp/email/kids-first-newsletter-registration

Wednesday, February 13, 2019

#ThankfulThursday: Maryland 5th Graders Fund Retreat Starfish Scholarship





The 5th grade students at Deal Island Elementary School in Deal Island, Maryland worked hard during the last few months raising money for the Children’s Craniofacial Association’s Annual Retreat and Symposium. This is the second time the students from this school helped raise funds for CCA. Last year they raised enough money to send two families to retreat. This year they raised $1,171.60 which will go toward a starfish scholarship. 




The students raised money through a bake sale, selling Christmas candy grams, and creating a “Wonder Funder” basket raffle under the guidance of their teacher, Michele Messick. 

It is encouraging to see such generosity from this class two years in a row. Ms. Messick's students are very special that all deserve a huge round of applause. She said of their efforts, "They truly did all of the work; I just gave them guidance. As their teacher, the best part of the entire process was watching the power of kindness spread from our classroom, through the school and pour out into the larger community. These students are amazing and I confident they continue to create a culture of kindness!

Monday, February 11, 2019

#WonderWednesday: Grace Anto Amazes at Cypress, TX Elementary School



  • Last November, speakers' bureau member, Grace Anto and her mother Lynn spoke at Rennell Elementary School in Cypress, TX. Approximately, 150 fifth grade students attended the assembly after reading the book "Wonder" in their classroom.

  • Ms. Silvestri and Grace Anto at Rennell Elementary School
    Fifth grade teacher, Allison Silvestri said, “Grace was so amazing and confident! My students loved getting to meet her! Her presentation was so engaging. We loved it!" The students received a gift off CCA #ChooseKind wristbands. Grace and Lynn told the students that they could post pictures on social media with the hashtag #ChooseKind. The students look forward to showing off all the areas of their lives where they strive for kindness.

    In a send off fit for a queen, the kids shouted a positive message for our CCA family. Watch it below!




Friday, February 8, 2019

30 Faces 30 Stories 30 Years: Lindsay Condefer




"In my experience, CCAKids represents Community, Compassion and Acceptance.   We aren’t a group of strangers, we are a Family. Through Lentil, I was blessed to find my way to CCAKIDS. Animals love based on hearts not our differences on the outside. They create a non-judgmental bridge between humans and the way life should be lived. Our children can relate to animals because they don't stare, they don't ask questions; they just enjoy the hug.  Little by little, all of us that have experienced this beauty will carry it forward to help change our world one day."
Lindsay K. Condefer
Street Tails Animal Rescue
My Name is Lentil
Mount Laurel Animal Hospital
Lindsay Condefer is an amazing woman no doubt. Before she began her "Chews Kind" activities, she was already active in her community and rescuing animals with Street Tails Animal Rescue in Pennsylvania. Then, along came an adorable French bulldog, Lentil, born with a bilateral cleft lip and palate. Lentil was one in a litter of five pups all born with facial differences. He was the only one to survive.  Lindsay met Lentil in 2013, fell in love, and became his caretaker. The adorable dog and his story - including the intense efforts Lindsay put in to help him thrive - took the media by storm, with thousands of followers joining little Lentil's journey. His viral success offered Lentil and Lindsay a platform. So with the world's attention, they began raising awareness via their blog, My Name is Lentil, and social media nurturing an enormous Facebook and Instagram following with fun photos, uplifting moments, and eventually genuine, authentic connections with families and children across the country. 
One of the most amazing gifts Lindsay has given the craniofacial community is the gift of fundraising. She's raised over $30,000 for CCA Families to attend the Annual Retreat and continues to give back annually. This loyalty and commitment is something we can never repay, but a love for which we are eternally grateful. We selected Lindsay as one of our 30 Stories because she truly changed the trajectory of our organization. By using her visibility to share the spotlight, CCA has been able to grow into new communities and bring along more supporters than we ever could have without them. Lindsay is truly serving to widen the circle of acceptance for our kids. 

Lindsay continues to visit children with facial differences in the Philadelphia area and across the country with organizations like CCA. She has added more "ambassadogs" to her crew, too, with Sprout coming to the CCA Retreat in 2018 (see photo above). When Lindsay is not traveling with Lentil to visit kids, she saves animals as Founder and President of Street Tails Animal Rescue in Philadelphia, PA, and is raising her adorable daughter, Charlie. 



Wednesday, February 6, 2019

Join Us On IGive, Shop and Give Back: $3 Bonus for CCA Ends Feb. 23rd

iGive




Become a new member or refer a friend and give an additional

$3 to CCA Kids today through February 23rd.
$3 New Member Bonus!
Use Tell a Friend to recruit friends to iGive by 2/23. 
When you install the iGive Button and keep it for 90 days we'll donate an extra $3!B

Install the IGive button by following these instructions. 


Shopping is easy. When you go to one of your favorite retailers that is a member of IGive universe, the button you installed on your browser will pop up, prompting you to click it, and begin shopping on for all your favorite goodies!





Monday, February 4, 2019

Words of Wisdom: "I focused on overcoming great adversity"





By Frederick Seitz

In 1992 just hours after I came into this world, the doctors left my parents with the same message every time they gave them an update on my progress. There was very little chance I would make it through to the next morning. The doctors questioned the quality of life I would have if I survived. Little did they know a lifetime journey had already begun. 

Ever since I was a kid, I knew I was different from everyone else. I have had my share of experiencing bullying and teasing during grade school many years ago. Along with that, people would stare at me in public and schoolchildren would either run away from me on playgrounds or just stare, not knowing how to react to someone their own age who looked uniquely different. It took a while to get used to as a kid and I developed a strong mind before most of my peers because I knew that when I got older, my parents wouldn’t be everywhere with me. I have also experienced discrimination within the education system especially in grade school. I was finally placed into my hometown district after 4th grade and everything changed past that point. 

Around the time I went into my teenage years, I learned to simply not care what people thought of me and I focused on overcoming great adversity. Some of that included the surgeries throughout my life, some intense and some modest, and dealing with people who got in my way of building my own path to success. Luckily, there were good people along my journey who helped me in ways I couldn’t possibly repay them. They’re the reason where I am today.

From that point when I was placed into my home district, my academic success accelerated rapidly well into high school and college. I built many friendships and significant connections. My life transformed because I took control of my own destiny when I was only 10 years old. It wasn’t clear at first but looking back, I know why I did not leave this world. I am living on borrowed time for a purpose. I don’t know what your spiritual belief is but I know it is God’s will for me to be the master of my own journey, my own destiny. Life is a road and the destination is only up to whose road it is. I do not believe there is such a thing as fate. You cannot control what obstacles you will face but you can prepare if you can see them soon enough. It is your steering wheel. No matter how impossible it seems, there is always a detour. Absolutely no one except yourself can stop you. There is always a way so go find it. A perfect example to resonate this idea is this quotation from one of my role models, Steve Jobs:

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

That really sums it all up. 

Living with Goldenhar Syndrome does make me rare because it is a rare condition but the force of determination my soul contains is more unique and unprecedented. That is what set me apart from the others. My body is a physical vessel that’s just different from most people. I am still here and looking forward to what’s coming next on the road.

February The Mighty Poetry Prompt



February’s Poetry Prompt: What #selflove means…

What self-love means
February is often known as the month of “love.” That’s why we’re partnering with Patricia Wheeler — poet and mental health advocate — and writing poems about loving ourselves.
She says, “We often compare ourselves to other people; whether it be our bodies, careers or relationships. We always talk about loving others and being kind to others, but what about doing that for ourselves? No matter what you’re struggling with, you can always choose to love yourself for exactly who you are.”
We’re sharing a poem Patricia (Trish) wrote below for some inspiration! It’s about loving your body for exactly how it is. Trish has struggled with an eating disorder for over 10 years, and she says, “This even helps me on days when I start having negative thoughts about my own self-image.”
Make sure to check out Trish’s Instagram page — @empathypoetry — and follow her on The Mighty to help spread hope to others.
Patricia Wheeler's self-love poem
If writing poems about #Selflove doesn’t feel like your cup of tea, check out some of our poetry prompts from previous months below:

Sunday, February 3, 2019

Catholic School in Los Gatos California Raises $1500 for CCA



We want to thank everyone from St. Mary's of the Immaculate Conception School in Los Gatos, California for their generous donation of $1,500. The seventh grade students inspired by the book Wonder which they read as part of their Language Arts curriculum decided to donate the proceeds from their Christmas sale to CCA.

Patrick Clifford, parent volunteer, writes, " My name is Patrick Clifford, I am a parent volunteer at St Mary's, Los Gatos, California.  Our 7th Grade Students carry our a fund raising event as part of their Charity outreach program.  They made and sold Advent Wreaths and the net earnings go to the Charity that the students select.  The Students together with their Home Room Teacher Mrs. Fijman selected your Charity, The Children's Craniofacial Association (CCA)."

We are thankful for this wonderful donation which will help CCA continue to serve the kids and families that need social networking, medical travel expenses covered, and cutting-edge, quality information about craniofacial conditions to live productive and happy lives. 




Friday, February 1, 2019

Researchers Need Your Input


Let's kick off Rare Disease Month right by helping researchers gather the data they need to improve the lives of people living with genetic health conditions.
Many researchers across the country are conducting studies to better understand craniofacial conditions. You can help improve the future of medical care for those born with facial differences by sharing your personal experiences. 
There are countless examples of research papers that benefitted from participants like YOU! Recently, Gabriella Miller and the Kids First Pediatric Research published a study thanks to the assistance of people affected by orofacial clefts. Read their study results here Orofacial Clefts Genetics Study. This publication is informative for medical professionals to better understand how orofacial clefts occur. 
You can help provide insight for current studies to pave the way for major breakthroughs in treatment AND to assist medical providers move toward a more patient-centered care approach.
YOUR willingness to participate is one vital way to give back.


CURRENT OPPORTUNITIES
Review the links below to see if there is a study that you are eligible for and can contribute your family or personal experience to help brighten the future for those born wth facial differences.

ALL CRANIOFACIAL CONDITIONS
Directed at CCA Retreat Attendees and regional Utah families
At the University of Utah and Primary Children's Hospital, we are trying to better understand the impact craniofacial abnormalities have on children and families.  This study will help us both understand and measure the many ways this disorder has affected your child and your family. 
If your child has a craniofacial abnormality (CFA), you may qualify to participate in a study.  We are working with families to create a quality of life (QOL) questionnaire.  The CFA quality of life questionnaire will help providers understand how CFA impacts quality of life of families and those who care for young children with CFA. The goal is to give providers better understanding of the impact the disorder has on families’ lives, while also providing a framework for discussing and solving the problems families face.  We hope the development of this instrument will help other families impacted by CFA .
We will be conducting some focus groups during the upcoming CCA Retreat in Salt Lake. We hope you will share your family’s experiences with CFA with us, so that it can be reflected in the instrument we develop.  The survey here will allow you to sign up for a focus group. It also asks for a limited amount of information about you and your child, to allow us to plan the focus groups and analyze the transcripts. All personal information is very carefully protected.
If you have additional questions, you can email our study team at Cleft-Research@hsc.utah.edu. The lead researcher and doctor for this study is Jonathan Skirko, MD
Families and individuals with Pfeiffer Syndrome, Apert Syndrome, Crouzon Syndrome, and Muenke Syndrome are invited to inquire about the reserch being conducted by Dr. Jabs and Carolina Sommer with the Born A Hero, an organization empowering kids born with Pfeiffer Syndrome. 

Genome Alliance 
Genome Alliance hopes to learn more about your understanding of genetic testing and family medical history with their one-minute survey. 
APERT SYNDROME
Dr. Drorit Gaines in California is conducting research on the connection between ADHD, Autism and sensory disorders among children born with Apert syndrome. All that is required for this study is an Apert Syndrome diagnosis, copies of your medical records, and the completion of a questionnaire. Click the link above for more information. 

CLEFT LIP AND PALATE 


Researchers across three hospitals and universities are studying surgical outcomes of cleft lip patients. The Seattle Children's Hospital, University of Illinois - Chicago (UIC), Shriners Hospitals for Children (Chicago) and the University of Washington have teamed up to learn from patient and their parents about their impressions on change of their infants face after surgical interventions. Study coordinators, Laura Steukle and Solange Mecham describe the process of the study and how you can help in the description below, 

Our study team has spent the last two years interviewing parents and craniofacial providers to create a tool to evaluate interventions and treatments that infants with a cleft lip with or without a cleft palate are going through. Now that this tool has been developed, we are looking to validate the questionnaire. To do this, we are asking parents of young babies and young children with a diagnosis of cleft lip with or without cleft palate to complete the iCOO questionnaire a few days in a row at the following times 1) before surgery 2) 2 days after lip surgery and 3) 2 months after lip surgery.  As our way of saying thank you, we are giving parents $5 a day each day they complete the iCOO with a bonus $25 for each complete series, for a total of up to $160 for their time and effort. We are inviting up to two caregivers in the home to participate. Our goal is that this tool will help clinicians and researchers better understand how these interventions are affecting the whole health and well-being of infants and young children with the hope that this understanding will improve future cleft care.

GOLDENHAR SYNDROME

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. Nothing of this scale has ever been done for this spectrum of disorders.

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!


Richard Alan Lewis, M.D., M.S. Professor, Departments of Molecular and Human Genetics, Ophthalmology, Medicine, and Pediatrics, Baylor College of Medicine and Texas Children's Hospital




UNDIAGNOSED
The overall goal of this project is to connect rare and undiagnosed families directly with genomic researchers to discover all of the genes that cause rare craniofacial diseases, and use this information to increase the rate of rare craniofacial disease diagnosis. 
Participants will complete an online form about their family and childhood onset rare and genetically undiagnosed craniofacial condition. From there, a member of our study team will set up a live video conference with the family to explain this research study and make sure that all of their questions are answered. With permission, we’ll reach out to the patient’s doctors directly to collect a copy of their medical records. Then, we’ll mail a sample collection kit directly to their house. Upon returning the kit to The Broad Institute of MIT and Harvard, samples will be registered in our tracking system and DNA will be processed for exome or genome sequencing. We will then begin analyzing data, comparing it to healthy individuals and identify which mutations in the genome are common, and which are rare and potentially related to their craniofacial condition. If we find results that explain the underlying cause of the rare condition present, we will request a second sample that will be sent to the Partner’s Laboratory for Molecular Medicine (LMM) in Cambridge, MA and will be confirmed in their clinical lab. LMM will provide a clinical report explaining the genetic findings, and these results will be shared with you and your local doctor. Click the link above for more information.