Tuesday, February 20, 2018

#WonderWednesday: Deal Island, MD Student Donors Send 2 Families to Retreat



Deal Island, Maryland elementary school teacher, Michelle Messick contacted us to share her "Wonder" story. Her class will be sending two families to CCA's Annual Retreat and Educational Symposium Day. She tells us how her students raised the money for CCA and the activities she planned around the book. Messick inspired these students to give back in a big way. Two families will benefit from this small community's hard work. Thank you so very much for all the kindness, love, and gratitude emanating from Maryland. You will have a profound effect on our craniofacial community in June. Thank you!





Ms. Messick writes...

Our class decided to raise the money after reading “Wonder." CCA graciously donated the books last year to our school because I had to borrow a class set every year. This year my students felt led after reading materials from CCA to send a student to the annual retreat. 

Never in our wildest dreams did we imagine raising enough money to send TWO families! Our school, Deal Island Elementary, is located in a small community, Deal Island in Somerset County, Maryland (Eastern Shore of Maryland). The students brought in donations to create a gift basket to raffle with “Wonder," “Auggie and Me," 365 Days of Wonder, a $50 movie gift card and a TShirt we made for our trip to see Wonder on the big screen. What makes this so impressive in my eyes is that all of the money raised was raised by only 16 students in a period of about 7 weeks! We like to use the phrase “small, but mighty” to describe ourselves because even though we are a small school, in a small community, my students are capable of doing mighty things. 

I wish I captured their faces when I told them how much money they raised! One student said, “I have never felt this happy and I didn’t win!” That is what is is all about; feeling good because you did something for someone else. Needless to say, I am one very proud teacher on so many levels!

Dallas Area Families - Celebrate Rare Disease Day on Sunday, Feb 25th 2-4PM



The Delta Sigma Theta Sorority Southwest Dallas Chapter Alumnae are honoring CCA Kids with an award! They hope to raise awareness about rare conditions and disorders through hosting a Rare Disease Tea on Sunday, February 25th. 
We would love to have you join us for tea with the ladies of the Delta Sigma Theta Sorority! The event is called the "Discover Something Tea," in honor of Rare Disease Day 2018. The SWDCA Ladies will honor those with craniofacial conditions, as well as two individuals with other rare disorders.
You will hear three speakers and get to mix and mingle among friends.
Erica Mossholder, Executive Director of CCA, will accept an award on behalf of all the CCA Families in the Dallas-Fort Worth area. We hope you can join us so we can recognize you at this event!
  WHEN
Sunday, Feb. 25 from 2pm - 4:30pm
WHERE
DeSoto Recreational Center - Blue Bonnet Room
211 E. Pleasant Run Rd., DeSoto, TX 75115
WEAR
Attire is Dressy Chic

REFRESHMENTS WILL BE SERVED
for more info, contact the office 214.570.9099

#NewsDayTuesday: "Wonder" Kindness Challenge Accepted!




Jonathan Siebert is talking to students across the country about the book, "Wonder." Siebert recently spoke with students in South Carolina. Read about his story and how he has helped students understand what is means to be kind.

You can join him by volunteering to speak at a local school or via skype. Contact areeves@ccakids.com to take the Kindness Challenge. Be part of our "Real Life Auggie Program."

Monday, February 19, 2018

From the Bench with Francis: Interview with Craniofacial Researchers at King's College London






From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith



By Dr. Francis Smith

Dr. Smith travels all over the world to speak and collaborate with others on research efforts in the craniofacial sphere. In this video, he speaks with Dr. Paul Sharp and his colleagues at King's College in London to discuss the work they are doing that will change the lives of children born with craniofacial conditions. Topics covered are craniosynostosis, genetics, embryotic development, and future research on the ear.

Enjoy! There is something here for just about everyone


Tuesday, February 13, 2018

#ThankfulThursday: IGive ...Do You?




IGive puts the fun back in fundraising! Our wonderful friends at IGive are running a promotion. Log onto our IGive page to raise funds for CCA while you shop.

$5 New Member Bonus!

Use Tell a Friend to recruit friends to iGive by 3/11. 

When they install the iGive Button and keep it through 5/31 we'll donate an extra $5!

Lots of exciting opportunities to buy new things for you and help us in a small way, too. 

Thanks!

#NewsDayTuesday: Fun Run in San Angelo, TX to Raise Awareness About Moebius Syndrome





We love this positive story of friendship, fitness, and awareness out of San Angelo, Texas. This woman is running a benefit fun run to raise awareness about Moebius Syndrome. If you would like to participate, go to the website for the event. 

This event is taking place days before Moebius Syndrome Awareness day. January 24th 




Thursday, February 8, 2018

Many Thanks to Camacho Home Group


Trent Family with Brittany Brown at their closing which supports CCA!



After an amazing collaboration hosting the "Wonder" screening in Dallas in November 2017, the Camacho Home Group of Keller Williams Realty continues to support Children's Craniofacial Association by giving 5% of their net commissions throughout 2018. This means with every home bought or sold yields a donation to CCA. 

The Trent Family is the first closing of the year where CCA is the direct beneficiary of this pledge.  Thank you Trent Family and Camacho realtor and CCA Mom, Brittany Brown!

Awareness and support for CCA families means a lot to the Comacho Home Group team because one of their team members, Brittany Brown, is living life as a CCA Mom, too! Brittany has a 2-year old son, Michael, who has Treacher Collins syndrome. The ability to promote kindness through this fundraising effort to benefit CCA means the world to her family. Brown is thrilled that her work team has pledged to give back so significantly to other CCA families. 


You need not live in Dallas Fort Worth to helping Keller Williams donate to CCA! All CCA Families around the country can contact Brittany Brown for their real estate needs (214-838-3669 or Brittany@CamachoHome Group.com).  Through her national referral network of top real estate agents, Brittany can help CCA Families with any real estate transaction across the country (and certain locations globally). 

By making your first phone call to Brittany you can ensure that commissions from the purchase or sale of your home will support CCA. Camacho Home Group's goal is to donate $50,000 to CCA.   Brittany will ensure you work with a great agent in your area and help raise money for our great organization. 
We, at CCA, cannot thank the Camacho Home Group enough for helping us.  Call Brittany and she will put you in contact with a Keller Williams realtor near you.  

Monday, February 5, 2018

#NewsDayTuesday: Video, Boy with Apert Syndrome Raises Funds With 5K Run






While this event already took place, I think it is a great example of the kind of fundraiser that promotes health, wellness, and awareness about facial differences. Please read Cam's story as covered by a local news station in Winston-Salem, North Carolina. Perhaps come up with your own version of the event to help benefit CCA!

Thursday, February 1, 2018

Help Global Genes with Rare Disease Research






Global Genes and Rare University  are partnering to develop a second course to inform and raise awareness about genetics. They need your help. Their second course will be entitled, Genetics 101 - Understanding the Basics. 


This course is being developed directly in response to the survey we conducted last year with the Foundation Alliance to find out which subjects alliance members find to be of most value.
 
To help ensure we develop a high-quality course that best meets the needs of the Rare community we ask you to help us by completing a SHORT survey! It should only take only about 8-10 minutes and we would be grateful if you could share it with other individuals your rare disease networks! 

We are looking to get at least 100 responses! 

If you have a few minutes please click  HERE and take the survey! 

Rare Disease Day Information & Event in Bethesda, MD.




Rare Disease Day is around the corner. It is one month away! This year it lands on February 28th. Spokesperson from the National Institutes of Health (NIH), Chris Gillin, writes to inform us about us about Rare Disease Day and some events around this special day of awareness. Gillian writes,

"Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. This year’s global theme is "Research” continuing from 2017, and the slogan is “Patients are not only subjects but also proactive actors in research.”

2018 Event Information

Thursday, March 1

8:30 a.m. – 4:00 p.m. ET

Masur Auditorium, Building 10

National Institutes of Health

Bethesda, Maryland

Register Here

Sponsored by NCATS and the NIH Clinical Center (CC), the event will feature presentations, posters, exhibits, an art show and CC tours. Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

For more information or to register, please follow this link.