2009 Connections: A Conference for Patients and Families
Families, adults, teens, expectant parents, grandparents, friends, and professionals connect in Scottsdale
CPF’s annual Connections Conference brings together people affected by craniofacial birth defects. At the morning coffee, every face is a new one. By lunch time, it’s a first-name basis. By afternoon snack break, the last session is late starting because everyone would rather continue their conversations. Connections is about bringing people together to share and hear their common and not-so-common experiences.
“We had a great time. My fondest memory was seeing people who have gone through the same thing that my family has gone through. It is always wonderful to also meet new people. The stories they share are always special and usually bring a tear to my eye or I am shaking my head going “I understand what you’re saying.” I don’t have that here at home so when I am able to go to the Connections Conference it is a very special time.”
- Robin Sivertsen, Connections participant
Where and When:
- Doubletree Paradise Valley Resort, Scottsdale, Arizona, April 17-18, 2009
Blessings-in-Disguise panelists answer questions from Connections participants. Panelists Kathy Wittenburg and her daughter Jackie listen to panelist Gina Butchin share thoughts about some of her experiences managing care for her own cleft lip and palate.
Who:
- 61 participants
- 13 families
- 16 children
- 14 professionals
- Participants from 16 states and 2 countries
What:
- Experienced families and adults affected by craniofacial birth defects shared their successes and lessons via Blessings-in-Disguise, a family/patient panel that received questions from Connections participants.
“I am so grateful I had the opportunity to participate in the conference, I met some wonderful people and made some new friends. The most rewarding part was seeing for the first time how sharing my personal experience can help others.”
- Gina Butchin, panelist, Blessings-in-Disguise
From infants to grandparents,
Connections is a casual gathering
of people of all ages. Tara Olson and Wes Nixon
enjoy a round-table discussion
while their son Parker plays nearby.
- Connections’ Team Panel answered specific questions about team and specialists’ care.
- Small-group Round-table discussions focused on specific developmental issues throughout childhood and adolescence, as well as special-interest, discussions including Genetics and Craniofacial Issues, Managing Speech Development and Therapy Decisions and, Insurance and Craniofacial Care.
“Our family had such a wonderful time at the conference, we are looking forward to joining you all again. As for our most memorable moment; meeting with Theresa Grebe about our Genetic history. We learned so much from her and since we met with her in Scottsdale we have been working hard to rule out any type of syndrome that our family may have. So far blood tests have not come up with anything. We are doing this for general research and for the comfort of having future children.”
- Ashlee Turman, Genetics Round Table participant
Connections is a great place for a nap. Ian and Emily Buzka cradle baby Austin while he takes a little break from the day’s excitement.
- Children’s Programming including visits from two therapy dogs, music, movies, art exploration, kids’ yoga, and snacks!
“William’s experiences are always something wonderful as well. He said to me that he loved making more friends who we are now talking to on a weekly basis. He also loves to share his experiences and help others. He said to me that if he didn’t have his cleft he wouldn’t have a chance to go to the conference — that is why he doesn’t mind having his cleft. It has given him a very special self-esteem.“
- Will Sivertsen, as told to mom, Robin
A picnic lunch is a welcome break for fresh air and sunshine.
Will Sivertsen enjoys a second trip to the pizza buffet
after a morning of crafts, yoga and games.
How:
- 9 ACPA members and other professionals — Cassy Aspinall, Kerry Callahan Mandulak, David Jones, Debbie Oliver, Earl Seaver, Patricia Glick, Stephen Beals, Therese Grebe, -– served as faculty and consultants.
- More than a dozen graduate-student volunteers from Arizona State University’s NSSLHA chapter supported children’s care and activities throughout the day.
- ACPA local arrangements committee members, Patricia Glick and Stephen Beals, invited families and individuals to share their care experiences with Connections participants.
Next:
- Join us for Connections 2010, Saturday, March 13, Omni Fort Worth Hotel, Fort Worth, Texas.
Connections 2009 Photo Gallery
More information about the Connections Conference
Last Updated: May 20, 2009