#ThankfulThursday: March Madness Brackets For Good Tournament Begins on Friday, March 2

Today we are grateful for March Madness. I realize it is a strange thing for which to be grateful, so hear me out. Brackets for Good helps nonprofits compete against one another to raise money. Friendly competition for the common good. Action starts on Friday, March 2nd. Sign up for an account at https://dallas.bfg.org/bracket.

Let's learn together what this is all about...

Brackets for Good...what's it good for? 

To raise money, of course. The format styled after March Madness NCAA Basketball tournament, Dallas-area nonprofits will compete against another to see who will raise the most money. Every $1 donated by YOU to CCA equals 1 point in the Brackets for Good tournament in order to move to the next round. We need to rack up a bunch of points. We can easily win this because we have a country-wide reach that our competitors may not.

Like most fundraising efforts, your participation is key. Here are four ways you can help us reach the final four, and ultimately, the championship round. 

1. Donate money to CCA  through the Brackets For Good Website (BFG.org) 

Donations to our organization through the Brackets For Good tournament website are the quickest and easiest way for people to support CCA during the tournament. 

2. Free Throws are a way that you can earn FREE dollars to make a donation and score points for CCA. There are 10's of thousands of Free dollars available in the 2018 tournament. Log in and see how it works. 

3. Donation Hotline, or phone donations  If you  prefer to give a donation over the phone you are able to do so by calling: 1-855-ScoreBFG  (1-855-726-73234)

The donation hotline will be available: 3/2/18 - 4/6/18  

• Monday - Saturday 9am ET - 7pm ET
• Sunday 1pm - 7pm ET

4. Bench Points

Bench points are funds raised offline during the tournament. In the name of helping you advance in the tournament, these points can be translated into points at a later time, during a later round. Like basketball players coming off the bench 

Upon donating the Brackets for Good will provide you with a tax receipt. 

Seems easy enough? (I think!??)  You can start raising money for CCA today by going to Brackets For Good, and creating an account.

Let's go to the final four. 

#WonderWednesday: New Jersey School Shares the "Wonder" of It All

This New Jersey school found fun ways to celebrate kindness and the premiere of the movie "Wonder" after reading the book in school. Some of the students shared about their experiences with the local school committee. Read about the various projects and ways this school talked all things Auggie Pullman.

#NewsDayTuesday: A Community Helps A Girl With Pierre Robin Sequence

Photo Credit: Hertfordshire Mercury, United Kingdom

Band of Builders in the United Kingdom creates bedroom to help this little girl born with Pierre Robin Sequence and heart issues. This story is both heartwarming and a great example of how a community can come together to find a way to help others. Sometimes people do not know how to help others with disabilities or medical challenges. Helping with the skills and knowledge others possess can have a very positive impact on others. A great example of kindness! 

Join the University of Minnesota for An Exciting Art Event from March 5 - 9th

Photo Credit: Positive Exposure, Copyright Rick Guidotti

The creator of Positive Exposure, Rick Guidotti, utilizes photography, film, and narrative to transform the public perception of people living with genetic, physical, and intellectual differences.

The University of Minnesota Medical School is hosting an event with Rick. Their goal is to promote the Positive Exposure movement by inviting patients with genetic conditions to share their stories over the week of March 5th - 9th, 2018. 

They hope to have four pediatric patients and their families, two on Tuesday (3/6) and two on Thursday (3/8), to join them at the medical school lecture hall, so they can hear their stories. 

During lunch hour on Friday (3/9), pediatrics patients (not limited to the four) will be involved in an interactive photo shoot with Rick Guidotti. The week will culminate with a Friday evening reception at the Weisman Art Museum from 5-7pm, highlighting the stories of the week through photography.

If you want to share your story, participate in the photoshoot, and/or attend the reception, please contact Lulu Song at the UM Medical School to register. We hope many of our CCA Families in the area will participate.

Bowei (LuLu) Song

University of Minnesota, Twin Cities

Medical School | Class of 2020

[email protected] | 651-334-7194

#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 [email protected] to take the Kindness Challenge. Be part of our "Real Life Auggie Program."

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

#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 

#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!

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.