Wednesday, February 20, 2019

Girl Scouts and San Jose Rare Disease Community Team Up For Walk






San Jose, CA is hosting a walk to raise awareness about Rare Diseases on March 2nd at Martin Murphy Middle School from 9AM - 12PM. Everyone can look forward to food trucks, face painting, t-shirts, and fun! Register and learn more about the walk here. The Girl Scouts will be on hand, as well as family representatives, from CCA! The girl behind the walk, is Mikela. On the website she writes why she decided to host this walk:

"My name is Mikela, and I am a Girl Scout of 12 years. I also have VACTERL Association, a rare disease that affects 1.6 out of every 10,000 live births. Through my experience with VACTERL, I've realized that there is not a lot of awareness for a lot of rare diseases. I am currently working on my Gold Award with the Girl Scouts, which is aimed at raising support and awareness for rare diseases (especially VACTERL). My Gold Award includes San Jose's First Annual Walk for Rare Diseases, a website with support and awareness for VACTERL (with other information about other rare diseases), an ambassador program, a patch program for Girl Scouts, and making and donating a good news book to donate to hospitals."

You can find us on Facebook, Instagram, Twitter, and Snapchat as @sjrarediseases."


Mikela hopes to build a website to educate people about VACTERL and other rare diseases. The money raised through registration and donations will support her desire to build a website. The Girl Scouts and the Rare Disease Community hope this walk will be a fixture for interested San Jose-area families.

Tuesday, February 19, 2019

Helen Webb-Prosser Shares Her Wonder Story at Maine Church

Editor's Note: I just loved this Wonder Wednesday story shared with us by Amy Webb-Prosser of Maine. She writes about her wife, Helen, presenting at their local church, West Scarborough United Methodist Church. Amy shares about the pride in her committed, Methodist congregation that is truly living the Methodist slogan of open hearts, open minds, open doors in everything they do. So without further ado...here is Amy's reflection about Helen's "Wonder" presentation. 


The event was held at West Scarborough United Methodist Church on Route 1 in Scarborough, Maine (where I am music director.) It evolved from a conversation Helen had at coffee hour with a group of women from the church about her experiences and the book "Wonder." A few of the women then ordered the book and read it, and suggested that she share her story with the church. So the Worship and Arts committee sponsored a showing of the movie Wonder last Saturday, January 12th, at 1PM in the sanctuary of the church, followed by a presentation by Helen, with questions afterwards. Helen had done the same presentation for the middle school where she works in coordination with their Wonder unit. 



There were about twenty people in attendance. Helen’s presentation was called My Wonder Story—talking about what it was like growing up with Pfeiffer Syndrome, and how it was similar to Auggie’s story. She also talked about how people with physical differences prefer to be approached, which fits in with West Scarborough UMC’s mission to become a more welcoming congregation.

It was very well received, and I actually had someone come up to me and tell me that they thought the congregation would be more comfortable asking Helen about her differences and experiences thanks to the presentation.




Monday, February 18, 2019

Time of Our Lives: The Andersons Find their Tribe at St. Louis Retreat



Six years ago, when Nathan was three and Owen was seven, Owen saw a video of an older brother that wanted to help his younger brother who was paralyzed. This older brother held a 5K for his younger brother, so Owen decided that he wanted to do his own fundraiser. We had heard of CCA through Facebook, but we had never really looked into it until that point. Once Owen's fundraiser was rolling, it became something bigger than we imagined, and we ended up, that year, at our first retreat in St. Louis in 2013. 

As soon as we walked into the hotel and felt the presence of so many families just like us, this calm and sense of belonging washed over us. I found myself just staring at everyone, which I know is such a "no-no" in our community. But I just couldn't stop, because I was beside myself with awe and excitement of what we were about to be involved in. Before the retreat officially began, we found ourselves at the Hard Rock Cafe, and there were several families there who we had not officially met yet. 3-year old, Nathan, saw a young man with a BAHA. He pointed from across the restaurant and declared, "Look at that boy! He has a BAHA like me!" At 3-years old that was the first time that he had made a connection like that, and the excitement and friendships that he made that weekend with a small group of boys kept him going the entire weekend. Thanks to Owen and his desire to help, he encouraged us to become involved in something so much bigger than our family and small social 
circle.

As each June approaches, our family has something to look forward to as Retreat comes closer. Every year Nathan and Owen continue to make connections, knowing that they is one of such an awesome and amazing group of people. CCA gives Nathan, Owen as a sibling, and David and I as parents somewhere to plug into each year. The retreat re-energizes all of us to prepare for the challenges and blessings of the year ahead. 

Friday, February 15, 2019

Time of Our Lives: Memory of A First Retreat





CCA celebrates its 30th birthday on February 24th. Each member of this ever-growing family has a story to tell. Some have been documented in the 30 Stories, 30 Faces, 30 Years campaign. Others, we will share through the series we call "The Time of Our Lives."
CCA has a unique way of touching our hearts. In an effort to include even more voices of the people that this organization touches, we hope you take a moment out of your day to read how we have had the "Time of Our Lives" over the last 30 years together.
Our first entry is from Deena Dyson and her daughter's first Annual Family Retreat experience. Take a moment and enjoy!
"Before we took our daughter, Teresa (now 12) to her first retreat at age 5, we didn’t yet know how aware she was or wasn’t about her different appearance. We got an answer quickly when we all met Meg Storie. While being introduced, Teresa beamed. With a huge smile and while pointing at Meg, she exclaimed, “You have my face!” CCA has had our hearts ever since." Deena Dyson, Mother of Teresa

#WonderWednesday: Kalyssa Connects with Northern California Fifth Graders




Kalyssa Aumann spoke at Truckee Elementary in Truckee, California for her debut "Wonder" presentation in front of over 100 fifth graders after they read R.J. Palacio's New York Times Bestselling novel.

















Truckee Elementary chose the book about Auggie Pullman a child born with a facial difference that enters middle school after being home schooled, because they wanted to "increase awareness of the power of words and the power of kindness."

One Truckee fifth grade teacher said, "Kalyssa was adorable. She had many slides and she was very personable. She connected with a lot of people. Overall, she was sensational." Such a rave review for her first time telling her story in front of 100 children!