Friday, October 11, 2019

30 Stories 30 Faces 30 Years: Brittany Stevens






"CCA means love and acceptance for everyone! One of our favorite CCA memories is listening to David Roche speak about "moments of grace,” and how his grandmother's influence, words and actions, taught him to stand tall...look people in their face and let them see your beautiful face! And, he talked about meeting the love of his life, Marlena."

                        -Harlena on behalf of Brittany Stevens, CCA Adult

Brittany Stevens loves to dance, give big hugs, tickle, and don

costume jewelry. Her devoted mother, Harlena, says, “Miss Brittany is pure love, light, and sunshine for everyone that she meets!” She attended Philadelphia Public Schools, via the Life Skills Program. The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, she blossomed into the unique woman that she is today. Brittany works at the PATH Workshop (People Acting To Help), participates in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and goes away to adult camp, Carousel Connections Camp, one to two weeks every summer where she continues to learn work and life skills.

Though the doctors did not think that she would talk, walk, run, or
even know she was in the world, Britany defied all those odds. She is non-verbal, but uses basic sign languae to communicate. Her younger brother, Quinn, and mother, know he signs and understand her well. Sometimes her brother understands her a bit better than even her own mother! This is a testament to their strong sibling bond.

At age five, Brittany was diagnosed with Nager syndrome. During this time, Harlena, her mother, was divorced, struggling to stay employed, maintain sanity, and provide for Brittany and Quinn. Thankfully, this strong family lived in Philadelphia near Children’s Hospital of Philadelphia (CHOP) where Brittany was a patient. While at CHOP they were connected with the National Organization for Rare Diseases (NORD), Children’s Craniofacial Association (CCA), and the Foundation for Nager and Miller Syndromes (FNMS). CCA and FNMS provided Helena with answers to questions they had about Brittany’s syndrome. All of these organizations offered avenues for advocacy, networking, and a community of acceptance of new-found friends that would become family. 


In the end, with all that this family was given, their goal became clear: give back  to CCA by helping new families and individuals embrace the challenges they face, and learn how to live their best life!





Wednesday, October 9, 2019

30 Faces 30 Stories 30 Years: Kate McAllister





CCA, in words, is... facts, connection, support, understanding, friends, and family. Our CCA journey started with getting facts on Kate and her syndrome. Without the financial help we initially received, Kate may not have had the same outcome medically. CCA worked on connecting us with others with Kate’s condition. We got from them family support and understanding from people who truly get what you go through and the path you walk. The friends we made through CCA and the Annual Family Retreats are now a part of our family! Thank you CCA for being there every step of the way!

                                  -Stacy McAllister, Kate McAllister’s Mother





Kate lives with her Mom, Stacy, Dad, Alan, and 11-year-old brother, Leland in Saint Paul Park, Minnesota. Her eldest brother, Dakota, 24, is a member of the Minnesota Army National Guard. This avid baker, girly-girl fashionista, dancer and US traveler is a fifth grader at Pullman Elementary School. Next year, she will join her brother at Olman Middle School.
Kate and CCA Adult and friend,
Sabrina Seitz


Kate connects with her CCA friends around the country through her culinary skills. Mom, Stacy, is encouraging because she knows baking brings self-esteem and a smile to Kate’s face. Mom feels, though this hobby is at times expensive, it is so very worth it for Kate. Mother and daughter look up recipe ideas on Pinterest, gather ingredients, and whip up batches of baked goods.
While cookies and brownies are her favorites to make, she has some extra special ideas with Halloween, Thanksgiving, and Christmas just around the corner.

Connection is not only born in the kitchen, but also on the family
Kate and CCA Friend, Avery Cooper
room couch where Kate texts with her CCA pals, sharing her highs and lows with people who truly “get it” when it comes to growing up with a facial difference. Whether among her friends, in the classroom, or when conversing with her doctors, Kate always pushes for more -- more information, more fun, and more brownie recipes! She truly is a seeker in all facets of her life. Mom says, “she is very much in charge and wants to know all the information people are willing to give her.”


Stacy shares that raising Kate made her more of a helicopter parent, one that is now far more overprotective of her youngest child. Mom is always aware of where Kate is, who she is with, and tends to worry more when Kate is out on her own.

“I am amazed at the amount of people in our world that can’t see past the outside of her to the amazing, beautiful human she is. She is beautiful in every way that is important. Many who take the time to know her, love her!!”

Stacy’s concerns especially extend to the impending transition to middle school, where Kate will encounter kids from the six other elementary schools in the district. “All those new kids -- It’s overwhelming,” Stacy says.



Right now, though, the McAllister’s will encourage Kate to stay in the moment, and enjoy this year through baking, attending monster truck rallies, camping, and bonfires. Time together in nature is especially restorative for this family, as they want to make the most of the great outdoors before the freezing cold, winter weather descends on the midwest. In the months before Fall 2020, when Kate goes to middle school, the McAllister’s know their CCA network will be there to lift them up.

Stacy sums up the relationships she has with other CCA families by stating their family is, “blessed with the most amazing women and men that have been at my side, or on the other side of the phone. They walked into our lives, giving us true, unconditional friendship and understanding that those who do not live this life will never understand.”






Sunday, October 6, 2019

#WonderWednesday: Angie and Marco Visit Armstrong School For Fourth Time



Angelica and Marco Garcia spoke to 120 eager students at Neil Armonstrong Academy. This was their fourth visit to the school in as many years to talk to the students about what life is like living with a facial difference. The students read the book "Wonder" and Marco and Angelica's assembly was part of one-of-a-kind learning experience where R.J. Palacio's book was brought to life through their presence and words at the school. Thank you Angie and Marco for your continued service to CCA and the students of Utah. If you are interested in having an adult or child with a facial difference   come to your school while reading "Wonder," please contact Khadija Moten, khadija.ccakids@gmail.com or fill out this form. If you are an adult or child with a facial difference and want to share your story, you should go to our speaker's bureau website.  


Here is what Angie had to say about the experience at Neil Armstrong Academy: 
It was so WONDERful to see the new batch of 6th graders this week! It was our 4th time coming and it just gets better every time ☺️ We love the innocent honesty of children and wish more adults could learn from that. We had encouraged them to ask us ANY question their hearts desire. One child asked if we were going to have more children and a few classmates shushed them, but we thanked him for asking that question and I answered that hopefully through adoption "yes."  And R.J. will always be our first child and his passing didn’t stop us from the idea of giving more dear children a stable loving home and family. We also emphasized that we are not limited to adopting children with Apert syndrome. I’ve noticed that with adults too, they assume that we will just focus on adopting kids with Apert syndrome. If the time comes that we are in a place financially and legally to adopt, if there’s a child that wants us to adopt them regardless of our looks and there is equal love and a positive dynamic present, then we are so going to adopt them. #heartsforRJ #wonder #choosekind #cam2019 #teachthekids

Saturday, September 28, 2019

How Can We #ChooseKind For Those Affected By Facial Differences?



(Editor's Note: Angelica Garcia shared her thoughts with us after reading painful comments written on a local news stations website after the reporting of a murderer with a facial difference. Through her reflection, she asks how can we all choose kind.)

Angelica Garcia 
KUTV 2News’s recent article about a murderer sparked a flood of cruel comments fixated on his bold facial difference. A commenter posted a photo of “Rocky Dennis” from “Mask” & not only did I inform the lady that the movie is based on a real story about a real boy but it is an insult that facial differences are often slapped together with the world of criminals and villains. 
All of this is just HOURS after Marco & I talked to 3 6th grade classes about the value of kindness, beauty in diversity & the education about & humanness of kids & adults with facial differences. 
I’ve been pretty mild about advocacy but now I realize I need to put the pedal to the metal & crank it up higher. The article did not associate villains & horrid criminals with innocent people with craniofacial conditions but the comments were cruel. It makes me think, what if they see a child with a Craniofacial condition? Will they act the same & react in a horrified way? Well, some people already do & that is unfortunate & something I’m hoping to change. Why can’t people be more aware that different is beautiful. 
People, Marco & I talk to schools, youth groups, clubs & any other groups about disabilities, facial differences, the true value of kindness & beauty in diversity FOR FREE & we mostly will do it for free forever to teach people that kids like our late son aren’t monsters, they’re just people, children who are trying to live their life. 
You may think you don’t need to talk to your kids, friends & RELATIVES about this, but it never hurts to talk about it & how YOU know at least 3 people who have facial & physical differences & they are people who are (I HOPE) good people who are just trying to help the world be a kinder place.

What else can we do to make this world a kinder place? 

Friday, September 27, 2019

Attend An Abilities Expo Near You! I Did...Here's What Happened...



A few Sundays ago, I attended the Abilities Expo in Boston, MA. Abilities Expos are hosted across the country in a wide variety of different cities. If there is one near you, and there will be (check this list) I encourage you to go. Once there you can see what your local, and national area companies and nonprofits have to offer people with disabilities, chronic illnesses, and rare diseases. I receive information I did not know I needed. There is so much support out there for all of us. In addition, there is cutting-edge technology and products to support you or your child lives a more enjoyable, productive lives. Here are a few of the companies and organizations that I think we in the CCA community could make the most use of. 


1. M-Brace TacTee

This incredible kit allows people with differently-shaped hands to grasp and hold items like water bottles, markers, pens, knife, fork, and spoon with ease. I really loved the magnetic design and that the various parts were dishwasher safe. The bit that attaches to your hand comes in three sizes, small, medium, and large. It is similar to Eazyhold, another product we have featured on the blog, to make the world a bit more accessible.

2. Low and Go 


This is great for anyone with a wheelchair. These wheelchairs allow you to go onto the beach, gain access to the ground, and lower spaces in the world which you are more likely to encounter in the outdoors. A great option if you or your loved one enjoy nature. I was impressed with the design and durability. 

3. Path International 

Path International is an internatinal organizaiton that provides access to equine therapy and other horse riding. Go to their website to find stables and resources near you. I know many children who enjoy riding, this organization encourages all things equestrian. Reach out to them and get started. 

4. National Ataxia Foundation 

The National Ataxia Foundation is wealth of resource and support about ataxia, or "loss of balance and coordination that is not due to muscle weakness." Loss of coordination can be due to a variety of different neurological and medical conditions. The Foundation is based in Minneapolis and can be useful in getting more information about how to best treat or find providers for ataxia. One common need is for speech or occupational therapy. Parents, guardians, and caretakers may be interested in the the connections these folks could help you make in your neck of the woods. Contact them by phone at (763) 553-0020 or email naf@ataxia.org

5. Brilliant K9

If you have a service animal the harnesses built by this company will make them more comfortable. I liked the utility of the harnesses having two side packs for documentation and supplies. These harnesses also allow for one hand operation, too. Learn more at http://www.brilliantk9.com

6. AirBnB 

Everyone knows about AirBnB as they have ben the de facto vacation accommodation option for many of us. Did you know they offer Adapted Experiences, providing its customers access to "unique activities hosted by passionate locals who have included detailed accessibility information to make their travel experience more inclusive for guest with disabilities."* They are based San Francisco. Learn more at http://www.airbnb.com/adapted. 

7. ADAPTS (Emergency sling for emergencies) 

Finally, I really thought this next item is must have for anyone in a wheelchair. ADAPTS is a portable and affordable transfer sling designed to help people with disabilities evacuate planes, trains, cruise ships, and hotel rooms."* This is must have if you or your loved one utilizes a wheelchair. Learn more at http://www.adapts.org 



*Quotations from the exhibitor listings in the Directory and Buyers Guide provided at the Exposition.

Wednesday, September 25, 2019

#ThankfulThursday: Dallas Craniofacial Acceptance Month Picnic 2019




Photo Credit: Brittany Lee

Thank you so much for coming out to the Dallas Craniofacial Acceptance Month 2019 picnic on Saturday, September 14th. Around 150 people came out to gather for a fun day filled with Spring Creek Barbeque, face painting, character visits, crafting up some kindness rocks, and personal portraits painted by a talented artist. The Carrollton Police even stopped by to see what was happening and take pictures with the kids! It was a warm, fun day, and we were so pleased that everyone made our 15th annual picnic a success. 


  Thank you to all of our volunteers and vendors that donated their time to make for a wonderful event. Thank you to our photographers Shannon Reicherts and Brittany Lee for capturing the festivities. 

Photo Credit: Shannon Reicherts

Photo Credit: Shannon Reicherts

Photo Credit: Shannon Reicherts


Photo Credit: Brittany Lee
Photo Credit: Brittany Lee


CCA staff were on hand to with Dallas-Fort Worth area medical professionals, too. Many thanks to the doctors and local, supporting nonprofits that came out to spend some quality time with the families they serve. 

CAM picnics are the backbone of Craniofacial Acceptance Month celebrations. They happen across the country throughout the month of September. There are a few more picnics and gatherings happening this weekend, please check the graphic below or our website to see if there is one in your area. 


Thank you for keeping this 15-year tradition alive. All of our kids know they are not alone, and our parents and caretakers make valuable connections that will last a lifetime. The support we give one another is the greatest gift to give and receive. 








Monday, September 23, 2019

The Mighty #52SmallThings Challenge is Acceptance for #CAM2019

Thursday, September 19, 2019

RESEARCH ROUNDUP: Contribute Your Voice & Experience To These Research Studies



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 benefited from participants like YOU! Recently, we covered research that was done at Seattle's Children's Hospital and the University of Washington. Learn more about the positive outcomes you made possible in this CCA Kids Blog post.
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

Elizabeth Zielins is a surgery resident doctor at the University of Wisconsin who was born with a cleft lip and palate. She is studying the effects of trauma and possible trends toward PTSD.
She says, "Part of my motivation going into plastic surgery has been to help bring awareness of the difficulties people with facial differences go through to the medical community. One of the ways we are doing this at UW is by conducting research studies."

"One of our studies is looking at whether or not the experiences people with facial differences go through can lead to symptoms of Post-Traumatic Stress Disorder (PTSD). (Traumatic experiences may include both having surgeries/invasive procedures, dealing with day-to-day appearance-based discrimination, and everything in between.) Viewing our experiences through this lens may lead to insights into understanding the long-term effects of having a facial difference."

"To do this, we are conducting an online survey for people with facial differences to fill out. Note: at this time the survey is only for adults 18 years of age or older. If you are interested in participating, please click on the link below to learn more: FILL OUT THE SURVEY


Research study is for 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.