Year End Appeal: The Foleys

Thank you to J.R. and Karen Foley who wrote this year's Annual Fund Appeal. 

We are moved by their story, and think you will be too!

Please consider a donation at: bit.ly/donatetoCCA

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There is absolutely nothing worse than feeling totally alone and isolated, without love, acceptance, or understanding. Perhaps during this year of social distancing and divisive politics, you’ve experienced some of those feelings of being afraid and alone. None of us want to feel this way, but I can assure you there is a way to eradicate those feelings: by creating, sustaining, and engaging in our loving CCA community.

This year presented challenges, but CCA was determined to overcome them. When we had to cancel in-person gatherings, we increased our virtual support offerings from once a month to 4 or more meetings a month, and expanded the target audiences and activities offered.

While we faced a 40% decrease in donations, we cut back expenses and dug into the work. Even this letter, which harnessed the power of socially distant volunteers, has been scaled back so that we are only sending it to those of you who have supported us financially in the last 3 years: our most loyal donors.

And when we had to decide what to bet on in a year of uncertainty, we bet on the enduring goodness of our community. Therefore, we did not cut back on our programming. In fact, we increased the amount of financial assistance we offered to families, opening up what we funded and how much we granted to each request. As an organization, are flexible and nimble enough to meet the needs of our community at a moment’s notice – because of your generosity and our leadership’s disciplined oversight.

So we ask you during what is usually called the “season of giving,” to think about a “season of living.” Living through the hard times, so the future celebrations are that much sweeter. Living through struggle so our example can encourage others. And living with the certainty that things will improve if we commit to improving ourselves and the lives of those around us.

Please give today because your gift creates an “Aha!” moment for a young child seeing someone that looks like him for the first time. Your gift comforts the heart of an expectant mom, scared and searching after receiving a confusing prenatal scan. Your gift changes a teen’s attitude from “Why was I born like this?” to “I was born to do this!” Your gift quite literally changes a life story.

Thank you for your loyal support. Thank you for sustaining our work. And thank you for the example you set, so that we may continue with love and light in our hearts into a new, bright, and promising year.

Sincerely,

Erica Mossholder, Executive Director

CCA Year End Fundraising Appeal

“I have been delivering babies for over 25 years and I’ve never seen anything like this!” Those are not the words you want to hear from your doctor after you have just planned, prepared, and waited for the most exciting day of your life.

Whenever I think back to the day J.R. was born, those are the words that still haunt me.

What did he mean? Why did he say that?

Within an hour of J.R. being born, he was baptized and transported to a hospital in Boston and all I had were two Polaroid pictures of my baby. I was numb, but not for long; I left the hospital within 12 hours of giving birth, because I needed to start a new chapter in my life. And for those of you who have a child with a craniofacial difference you know it’s not just a chapter, its volumes, it’s a series.

Fast forward through 41 surgeries, hundreds of different doctors, thousands of procedures, and millions of tears… but millions of smiles and laughs, too.

Through our journey we have meet some wonderful people and have been a part of some wonderful organizations. Depending on what medical issue we were dealing with at the time, determined on how involved we would be. CCA always was there with their doors wide open.

When J.R. was young, we were pretty involved and I wanted as much information as I could get. My heart was overfilled with joy at our first Retreat: so many happy children that looked just like my son; so many young adults willing to share their stories to a mom that was always looking into to the future for her son. To see J.R. on the dance floor with a group of new friends just like him was overwhelming, what a blessing!

Quite a few years ago we had decided that we were done with surgeries, however, J.R.’s anatomy had a different path for us. He started having increased sleep apnea and some swallowing issues, so it was back to the craniofacial team to discuss jaw surgery. But before jaw surgery there is a lot of prep work: some teeth removal, palate expander, braces, just to name a few. Then the pandemic came and everything was put on hold. If you have to look for some good to come out of COVID-19, it is that it has given us the opportunity to slow down and reach out to some old friends and make some new ones, which is exactly what we did with CCA.

I am so grateful for the many virtual events that CCA has been running. We enjoyed the Virtual Retreat, all the different Zoom activities in September for Craniofacial Acceptance Month, but most of all, it’s that J.R. has been able to connect with others who have gone through jaw surgery and they have been so supportive and encouraging, so he feels that he’s not alone.

While I still remember what that doctor said to me 30 years ago, I however, have seen babies, toddlers, teenagers, and adults that look like my son and I can see past their face and into their hearts and that’s what genuinely matters.

These are truly unprecedented times and now more than ever we need your financial support to make sure our kids continue to feel connected and supported and with your donation to CCA that work can continue.

Karen Foley, CCA Mom



What being a member of CCA means to me, by J.R. Foley (age 30)



It’s quite an honor for me to be a member of CCA. It has helped me throughout my entire life.



While I don’t really remember going to the Retreats back when I was little, I do have old videos that prove to me how much fun I had at the hotel pool parties and ice cream socials.



I’ve even been to some Retreats which I remember even without video memories. I attended two Retreats which were held in Boston, MA, where I live, and one in Orlando, FL. With each Retreat we got to stay in really nice hotels, see old friends and make new ones. We did all kinds of fun activities together and one my favorite parts of the Retreat is the Dinner/Dance. Usually the day before the actual Retreat starts, there are some educational sessions and it was cool to see some of my doctors speaking at the event.



CCA has helped me connect folks who have craniosynostosis like me. I’m even friendly enough to follow some folks on Facebook.



Nowadays with the Coronavirus, I’m even getting to know plenty of other folks through CCA’s Zoom sessions. In fact, I took part in this year’s Virtual Retreat 2020. I also participate in CCAs Alums & Adults monthly video check ins which have been so beneficial to me because I can talk about things that I have been through or will be going through and this group of people understands and helps me with my emotions.



On a very serious note, the thing that I want folks to know and truly understand is that people who have craniofacial differences are people, too. No one should ever, ever, EVER judge someone by the way they look. Look at entire person. What I mean by this is that, don’t go up to someone and just stare at them, which frankly I find quite seriously uncomfortable. Look at what they have to offer and give to this wonderful world we live in.



Being a member of CCA is such a blessing for me and I’m so very grateful to know so many folks who have the ability to show the world what they have to offer just like me.



We, as a community, can make a huge impact on other folks whether they have craniofacial difference or not.



James R. Foley (age 30)

Boston, MA