Keep Our Programs Off The Chopping Block

Today is Giving Tuesday, a global day of giving to nonprofits like Children's Craniofacial Association. On this day we encourage you to give to CCA to help us continue our programs -- financial assistance, Annual Family Retreat, and distribution of free curriculum and outreach to students in classrooms across the country that bring this curriculum to life. Will you help families like the Watts find community and access to care? We hope after reading their words you will consider CCA for your #GivingTuesday donation today. 

"The children that are a part of CCA have a strength and resilience about them that many adults cannot duplicate. It is from them and Jordan, where we gain our strength. Multiple surgeries, appointments, therapies, scans, bloodwork, I could go on for hours, but our children rarely complain. They understand it is part of their journey and we need to make the best of it. Sometimes that means video games at the hospital, other times it is the joy that is our CCA retreats.

Emma was born on July 2, 2018, at 36 weeks in Seminole, TX. She was brought to the NICU due to having Apert Syndrome. Apert Syndrome causes craniosynostosis which is the early fusing of the sutures in the skull, the fusing of fingers and toes, protruding eyes, and a pushed in midface. Emma’s midface was pushed in quite a bit and she was bagged for 5 hours in Seminole until the UMC transport team was able to come and get her. They got her intubated and took her via ambulance to UMC where she was placed on a ventilator until she was able to breathe on her own 2 weeks later.

Our first experience with CCA was when Emma was 4 months old and had to have emergency surgery due to a cerebrospinal fluid leak. I did some research and found CCA online. I contacted Annie and she sent me the application for assistance and the instructions on how to return it. At the time we had depleted our savings and were struggling to pay for food, gas, and hotel during our stay in Lubbock, TX. Emma’s medical team is two hours away, so when there is an emergency it takes a lot for us to go back and forth two hours daily. CCA reimbursed us on a majority of our expenses that we struggled to pay during this time.We were so thankful and so grateful for this. It was amazing to have an organization that was willing to help us. When you’re going through these situations, this support means more than I can put into words."

How has CCA given your family hope and strength this year?

"CCA has since assisted us with multiple trips to Sacramento, CA, where Emma had to have two syndactyly release surgeries. My husband and son (whom we did not have childcare for) would not have been able to come to assist me without the assistance of CCA. Emma has a tracheostomy and g-tube and we have to carry a lot of medical equipment with us during travel. This, plus a car seat and luggage, would have been impossible for me to do by myself, and driving to Sacramento from our home in Hobbs, NM, was a 34-hour drive. Thanks to CCA I was able to have the help from my husband that I needed to make the trips. CCA and Annie have been a giant blessing in our lives. Their assistance is so important to families like ours!"

Watt Family
Hobbs, NM
 

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more at this link https://tinyurl.com/y35ns7vnlink will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

When Travel is "Essential," so is your gift!

                                             

CCA is here for the small medical appointments and big surgeries. In 2020, every appointment and surgery feels like the "big one." Please consider helping families like the Watkins receive the essential care they need, care that is much scarier and harder to access during the COVID-19 pandemic. Read how CCA's impact made Jordan's medical progress possible. 


"2019 was a HUGE year for our little family, as our son, Jordan underwent LeFort III-midface advancement in July. We live in Palm Springs, which is a two-hour drive (minus Southern California traffic) to Children's Hospital Orange County, where our son is treated for Crouzon Syndrome. Midface advancement surgery is considered the "BIG ONE" in the craniofacial community, as it requires the patient to either wear an internal or external device to advance the bones in the midface forward. During that time, we were fortunate enough to be able utilize the Ronald McDonald House near the hospital for close to five months, on and off. This was heaven sent, as we could focus on Jordan and not worry about hotel bills or traveling constantly for follow up appointments. In November, Jordan's device was removed and he was able to return to school after winter break.

January of 2020, Jordan began school with his head held high and thrilled to be amongst his friends again. Then the pandemic hit and everything changed for us overnight. Jordan was, and still is, being taught virtually from home, per the state of California, which has made our family adapt just as most people did. I went from working full time, to having to stay home in the mornings to allow him to Zoom with his teacher and for me to help him with his classwork, then Jordan goes to work with me for a couple hours in the afternoon. It's not an ideal situation, but it is working for us for the time being. Dad was staying home with Jordan until September, when he was offered a position for a small, family company. It is a pay cut from his prior position, but it is a position that will pay benefits and has room for him to excel."


How has CCA given your family hope and strength this year?

"To say this year has been full of changes has been an understatement! The biggest change for us on the medical front is the Ronald McDonald House. Before COVID-19 we were able to utilize the House for appointments. The House is now restricted to only inpatient surgeries and everyone that enters the House is to be tested for COVID-19, amongst a few new rules. This protocol makes it difficult for families like ours that travel to appointments. It would be a bit easier if we only had one doctor to visit, but with multiple specialists and now a new diagnosis, which will now include another physician, meaning that we have several appointments over several days.

This is where CCA stepped in. Since the pandemic has hit, we have been able to reach out to them for assistance for hotel stays for Jordan's medical appointments, since the Ronald McDonald house is not available at this time. It has been a blessing to have an Association that understands that many of their families MUST travel in order to get the best care possible for their child.

On the flip side, it was also exciting to see our friends from CCA this past June, even if it was virtually. It was nice to see everyone's smiling faces and a joy to see all the talents that many of our children possess."

The Watkins Family
Desert Hot Springs, CA

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at this link) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

CCA Is Pure Love

2020 has been a wild year, but the CCA family is readily embraced everything that came it way in stride. Long-time CCA family members, Harlena Morton, her daughter Brittany Stevens, and son Quinn know how important the ability to adapt and pivot is when confronted with challenges. In Harlena's words, we at CCA excel at being Caring, Creative, and Awesome, this year and every year. Read more about how our community makes that possible. 

"Children's Craniofacial Association means "caring, creative & awesome" to my little family! In 1996, I was blessed to learn about CCA during a visit to Children's Hospital of Philadelphia's Plastic Surgery Clinic. After a few phone calls and completing scholarship and Retreat applications, my family eventually met the extended family that we never knew existed, but were happy to be welcomed into with unconventional love! From 1996 until today, CCA has provided financial support, medical assistance/guidance, educational knowledge and fabulous vacation retreats! My daughter, Brittany Stevens, was just under six years of age with a diagnosis of Nager syndrome, and I was a challenged parent, falling down into a world of despair, when we (me, Brittany and younger brother, Quinn), attended our first CCA Retreat.

 

Fast forward to 2020! The world is evolving during a frightening pandemic, but CCA didn't cancel our Annual Retreat! Instead, they pivoted and held the first ever Virtual Retreat! Yay! Instead of feeling sad about not getting to see each other in person and enjoy warm loving hugs, we shared our love, friendships and knowledge over technology! No, it wasn't the same, but it was creative and uplifting! I shared my personal thoughts on the "Realities of Relationships While Raising a Rare Child," and there were activities for all ages and for all of the rare craniofacial syndromes represented. The awe inspiring CCA staff didn't let time zones or COVID-19 stop our beautiful extended family from creating new memories or from gaining critical information on IEPs, 504 Plans, transition to adulthood, medical insurance challenges and options, as well as how to take care of your emotional health. They helped to bring us closer together...just in an unconventional way. 

 

I will continue to spread the word about Children's Craniofacial Association, and support the organization because their mission is simple...awareness and acceptance."

 

How has CCA given your family hope and strength this year?

"CCA means Family and this family means Pure Love."

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift of $100 or more, donated at this link, will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

Camp Cosmos and CCA Team Up For Holiday Fun Weekend, Friday, Dec. 11th & 12th

Are you ready for some holiday fun? ConnectMed and CCA has come up with a fun weekend to kick off the holiday season. Register by Wednesday, December 2nd to receive your activity pack for Saturday.

What's Happening? 

Click the image below, or go to https://bit.ly/cosmosfun to take part in December's ConnectMed and CCA's collaborative Camp Cosmos beginning on Friday, December 11th at 5:30 PM PST/7:30 PM CT with a virtual screening of "Wonder" starring Jacob Tremblay, Julia Roberts, and Owen Wilson. 

Then on Saturday, December 12th join CCA for a Career Roundtable with Casey Deakins and friends as they discuss, vocation, education, and career paths. Click the image below to register. 

Finally, the career roundtable will be followed by more family fun at 10:30AM PST - 2:30PM PST with guest speaker, Peter Dankelson, and then followed by activities, trivia, a scavenger hunt and more. Be sure to register by December 2nd to receive your activity pack on time. 

CCA Is A Strong Pillar For Our Families

 

CCA is both a strong community filled with loving people, and a place to find resources for families in need. Families, like the Tandazos, benefit from our resource sharing and financial assistance on a weekly basis. Please read the families reflection on these programs and consider a gift to CCA Kids to keep us going for years to come.  

Our family went through life-changing events as we were approaching Paolo's birth. My husband lost his job one month prior to Paolo's birth and we discovered at birth that Paolo had Apert syndrome. Our family was overwhelmed with all the unknown ahead of us. The CCA Kids’ website provided us with the initial resources, including trying to find qualified care teams. But the lack of a second income in addition to unforeseen ongoing medical bills for Paolo's care was an additional stressor - which CCA Kids alleviated. It was a huge relief to know that we could travel for medical care that he needed and have financial support for those expenses, may they be travel, housing or food. We are extremely grateful CCA Kids made this possible for us twice already within a year and took some of our worries away so we could focus on Paolo's care and recovery. As we continue our journey, we feel blessed to be part of this new family that CCA Kids represents.


How has CCA given your family hope and strength this year?

"CCA kids is an ongoing resource for us - may it be educational, financial or learning about other family stories. It helps feel that we are definitely not alone in this journey and stronger parents for our little Paolo."

Tandazo Family 

Charlotte, NC 

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at this link) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

CCA Is A Strong Pillar For Our Families

 

The McMahan family are truly dedicated to our community. They help with our Annual Family Retreat, and support other families with their craniofacial journeys. Here is what they have to say about CCA's impact!

The CCA Virtual Retreat was more than our family could have ever expected! The CCA staff worked tirelessly to make sure that every family, volunteer and presenter had the knowledge, access and warm welcome to show up for the most IMPACTFUL WEEKEND since “video call” has become our everyday norm! It was incredible to still be together, and proved the insanely strong bond our CCA Family truly has – no matter the distance! The blessing to connect and share during the small groups, parent panels & the farewell breakfast was so good for the soul. Our hearts desperately needed this time together and we’re grateful that we were able to join in – especially with the new families! Griffin really enjoyed seeing his friends during their group, these are the connections that he only finds with his CCA friends. The importance of this time is that he can hear from and talk with kids going through similar things – it’s priceless. But especially in the midst of this year when we all have been social distancing, the time our kids got to spend together was sacred. We are so thankful for everyone who made the Retreat happen!

How has CCA given your family hope and strength this year?

Even in the midst of global uncertainty, CCA has proven itself to be the strong pillar that we all can count on. Honestly, they have never skipped a beat! We are so proud of what CCA has been able to accomplish during this unprecedented time. CCA acted quickly, creatively and have been so flexible to adapt to the new normal. To see a constant stream of virtual events to bring families together, important content & resources, inspirational posts, and kindness and care being poured into the world EVERY SINGLE DAY… this is what gives our family hope and strength as we move forward and face life! We thank God for the beautiful gift of CCA… they’ve given us a platform to stand on, a voice to tell our story loud with, and a family from all over the world to proudly call our own! Hope is definitely not canceled! 

The McMahan Family

Belleville, MI

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at this link) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

Share the Love this Giving Tuesday

 

The Rzonca Family from Cliffside Park, NJ share their positive experience with CCA Kids. The Rzoncas made use of our financial assistance program helping their family receive the best care possible for their daughter. 

"I knew for several months that my daughter would soon be facing her second surgery for craniosynostosis. It was a hard truth to face, and I kept on insisting on more opinions to feel confident that I was making the right decision. Once I felt assurance to proceed, I already had a specific surgeon in mind. However, I was very anxious over how expensive it would be, from the surgery costs itself to travel and lodging."  

It was through a Facebook group that I learned of CCA Kids. I applied expecting nothing, and received compensation for lodging, rental car expenses, and food. I was so grateful. Thanks to CCA Kids I had less to worry about as we approached my daughter’s surgery. I will forever be thankful for their kindness during this difficult time in my life."

How has CCA given your family hope and strength this year?

"It warms my heart to know that organizations like CCA Kids exist. They took a very tough time in my life and made it easier to bear. I am happy to recommend CCA Kids as a relief to any parent I know whose child is facing craniofacial surgery. Every little bit of help counts when it feels like your world is upside down as your child faces surgery."

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at this link) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

CCA Keeps the Focus on What Matters

 

Our financial assistance program is very popular! Many families contact us during the most distressing times in their lives, like the Kemp family. Families need gas, flights, and hotel stays covered, so children can receive top-quality, medical care. Please read the impact our financial assistance program had on this family, and consider donating today to make this program available in the year to come. 

"We appreciate everything that the Children’s Craniofacial Association has done for our family. Without the help of the Children’s Craniofacial Association we would not have been able to make the multiple trips 300 miles North to Doernbecher Children’s hospital for our daughter Everly’s appointments and surgery. Their financial and emotional support has been such a blessing and relief to us. With the help of Children’s Craniofacial Association, we were able to stay multiple nights and be comfortable and focus on what was important, the health and recovery over our beautiful daughter, Everly."

How has CCA given your family hope and strength this year?

"The Children’s Craniofacial Association pursues a passionate purpose of giving hope and empowerment to families in need. Our family first-hand has experienced these acts of kindness and goodness from the Children’s Craniofacial Association. What continues to give us hope and strength through the whole process of our daughter’s cleft palate is knowing we have the support from such an amazing organization." 

Kemp Family

Medford, OR

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at the link below) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give Hope: Just When Our Families Need It

Hope. We are all hungry for it. CCA devoted itself to providing glimpses of hope through March, April, and May as the COVID-19 pandemic overtook our lives. Then, in June, CCA shouted from the rooftops that "Hope" would not be canceled this year. While we could not have an in-person Annual Family Retreat, we would have one dynamic one online, reaching more families than ever before. Here, the Anderson share how these virtual gatherings, especially our online retreat programming injected some much needed positivity and hope for their family. 

We have been a part of CCA now for seven years and have attended each of those Retreats. The Retreat really is the one thing that we all look forward to all year. It is our favorite week of the year. Although we were so sad when the in-person retreat had to be canceled last summer, we understood that it was for our safety, and we knew that CCA would come up with something to connect our families during such a tumultuous time for so many of us. As everyone learned to navigate the world of Zoom, CCA embraced the platform and came up with a plan to connect us with so many across the country and other parts of the world. We were proud and excited to take part in the Treacher Collins breakout session. We connected with old families that we love to see every year and met so many new families, as well. I would like to think that for those who normally could not travel or had never been to a retreat, that this virtual platform was essentially a toe-dip into what the retreat normally has to offer, and now they may join us at future retreats.


How has CCA given your family hope and strength this year?

What gives our family hope and strength in regards to CCA is to see the new families and those precious babies become part of the tribe. It gives us strength to know what CCA retreats have done for our family and to know that those new families will also have that opportunity to form the strong bonds between both the parents and the children in future years. It is this hope that keeps us coming back each year to fill our cups with love, acceptance and positivity.

Anderson Family

Rockwood, MI

Give hope! 

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift of $100 or more (at the link below) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift!

Build and Talk with Lego on Friday, November 20th at 9:00AM Pacific/12:00PM Eastern

 

Join Lego on Friday, November 20th at 12PM Eastern Time to build and talk about cyberbullying. Learn more about the event at this Facebook event page.

Friday, November 20, 2020 at 12 PM EST – 2 PM EST (17:00 GMT/ 12:00 ET / 9:00 PT) 

Need help talking to your children about cyberbullying? Join us on YouTube this World Children’s Day to discover some fun LEGO activities to get the conversation started with kids. We’ll have a live Q&A session with UNICEF cyberbullying expert Rocio Aznar Daban, ready to answer your questions. LEGO Masters judges Amy Corbett (LEGO Masters US) and Matthew Ashton (LEGO Masters UK) will be hosting and building. Bring your bricks and join the conversation! 

YouTube.com/LEGO: 17:00 GMT/ 12:00 ET / 9:00 PT 

Find more information and your free cyberbullying ‘Build & Talk’ activity pack at LEGO.com/cyberbullying

https://www.lego.com/en-us/aboutus/cyberbullying

ConnectMed, CCA Team Up For Camp Cosmos Weekend Dec. 11 & 12th, Movies and More

 

Bonds that Endure the Test of Time

 

We are so grateful that the Guzzos are part of our CCA family. They supported us through thick and thin, because our community is always there for them, too. Read what they have to say about the challenge this year has brought to all, and how CCA rose to the occasion for them and others. 

"Our 26-year relationship with CCA began in 1994 when we attended our first of 22 Retreats. Old bonds are maintained and new ones are made at each Retreat. This year’s "Hope Is Not Canceled" Virtual Retreat was no exception! The connections before, during, and after it were needed and appreciated by us more than ever because of the lockdowns due to COVID-19.

The usual flurry of social media activity leading up to the Virtual Retreat: 1. Helped squelch our disappointment at not getting to physically be together with our CCA family and 2. Gave us something to eagerly anticipate during an otherwise dark time for our nation. 

Our family’s preparation along with Harlena Morton to host the Group Meet-up was a time of reflecting on previous Meet-ups and joining together to have the best possible Virtual Meet-Up. The Zoom meetings in preparation for my moderating the Virtual Symposium IEP session was a time of cohesion with presenters to get accurate information out to other families.

Seeing our CCA family virtually during the symposium sessions, group meet ups, presentations, dinner dance, and breakfast gave us some normalcy during the 4 days during which we should have been together with our CCA family. Virtual Retreat follow-up activities continued contact with our CCA family."

How has CCA given your family hope and strength this year?

"Our family’s faith in CCA’s mission being carried out by a minimal staff and an army of volunteers who are committed to CCA and each other was proven during this pandemic. The Hope Is Not Canceled theme of the 2020 Virtual Retreat showcases CCA’s strength—the ability to remain relevant regardless of the circumstances!"

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

#GivingTuesday: One Day Defined by Generosity

GivingTuesday is Dec. 1, 2020

GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world.

GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Over the past seven years, it has grown into a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity.

Follow along in the weeks ahead as we showcase some of our wonderful families' stories leading up to this Day of Giving. This week we share with you the Hall Family of Provo, Utah. 

"2020 has brought a lot of changes, and our family was disappointed that we would be unable to attend the CCA Annual Family Retreat in Texas this year.  Luckily, CCA was able to adjust quickly and pulled together an amazing Virtual Retreat, appropriately titled “Hope is Not Canceled.”  

We were able to connect again with old friends and make new friendships; we are so grateful for the relationships we have with other CCA families.  We loved watching the talent show and hearing the wonderful speakers.  

We are inspired by our awesome CCA Kids and Adults who are achieving so much; having a craniofacial difference does not have to hold you back!" 

"A silver lining of the pandemic is increased virtual connections; we have attended CCA virtual activities that we would not have been able to attend in person because of geographical reasons.  We have enjoyed art activities, concerts, and education for parents; all from the comfort of our home!  We are grateful for CCA – the connections, friendships and hope that we have!"

The Hall Family

Provo, UT

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more, donated to this link will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.