2015 Family Day and Annual Conference Report
On July 10, 2015 several families went on an adventure to Imagine It! The Children’s Museum of Atlanta. The organization paid admission for all who attended. We experienced many different exhibits, such as: Fee-Fi-Fo-FUN, the world of fairy tales – Fundamentally Food – Leap into Learning – Let Your Creativity Flow – Tools for Solutions. Parents and kids had a great time exploring how things work, watching science presentations, and just taking the day off to have fun. Visit the museum website at Imagine It. We had a great time, and we’re sure you would too.
On July 11, 2015 the Global CMTC-OVM US Organization held their annual conference. This year’s conference was held in Atlanta, Georgia at the Atlanta Marriott Century Center/Emory Area Hotel, conveniently located off I-85 and minutes from downtown.
The general session was opened by CMTC-OVM US President Rebecca “Bec” Gallis. Bec gave an overview of the organization and introduced the board of directors. She explained our membership demographics and the need for the annual conference to be in a different location each year to accommodate more families. Then recognition was given as to all conferences attended in 2014. Bec explained the Rev. Dr. Edward Gallis Memorial Scholarship, and announced this was the first year for someone to complete an application and be chosen to receive the scholarship.
Treasurer Tabatha Broussard gave a summary of the finances of the CMTC-OVM US Organization. Tabatha outlined where our funding originates, and how our members play a critical role in our financial stability – meaning our members are responsible for our success. She explained that fundraising activities put on by the board and members has contributed substantially to our financial well-being.
Fundraising Chair Andrea West, reported with excitement the fundraising activities that have recently occurred. Beginning with Amazon Smile, Andrea explained it is a simple and automatic way for people, not just members but everyone, to support the CMTC-OVM US Organization every time they shop, at no cost to them. She also reported on the new CMTC-OVM US T-shirts and how they change color as the body’s temperature changes. Several shirts were sold at the conference. Andrea introduced a new fundraising project that was made known to us by member, Linda Clouse. It is a beautiful stainless steel bracelet with a pewter charm made specifically for our organization. We are happy to announce that Linda will receive the first bracelet as a gift, once they arrive. Thank You Linda! And finally, Andrea shared the fundraising project that Bec will be participating in called, “Dancing With the Divas.” The celebrity fundraising event will take place on July 25, 2015 in Zanesville, Ohio. Once it is confirmed as to how you can view this event, it will be announced on the website and Facebook. Following Andrea’s presentation, Lex van der Heijden of the Dutch CMTC-OVM Organization gave his presentation describing their activity.
Brandy James, MA., MS., Child Development Specialist, Family Life Educator, and CMTC-OVM US Secretary, gave her presentation to educate parents on concepts of effectively directing psychological/emotional situations focusing on the well-being of their child. Again this year, Brandy provided consultation immediately following each family’s medical evaluation. This continues to be a successful and welcomed addition to the conference and will continue in the future.
Dr. Joan Tamburro, Dermatologist from the Cleveland Clinic in Ohio, delivered an informative presentation regarding the dermatological evidence of CMTC and the other vascular malformations. Dr. Tamburro explained how what some say are insignificant birth marks, are truly markings that warrant attention. She continued by stating not just the skin is affected in some cases, it is critical to assess other body systems such as: cardiac, pulmonary, urological, neurological. She confirmed the statement; “Wherever the markings are located, tissues and organs beneath can be affected.” Dr. Tamburro discussed the types of things to watch for, what to avoid, and the importance of sunscreen. She also stressed the importance of consulting with a vascular anomalies team to receive the best possible care for the patient with CMTC and other vascular anomalies. She also mentioned how doctors are programmed in med school to always be right, but stated this is not always the case, especially in the world of rare diseases. Value the doctor who says, “I don’t know” they are more eager to find the answers. During her presentation she answered a long list of questions from the attending members.
Dr. Millan Patel, Assistant Professor in the Department of Medical Genetics at the University of British Columbia, was the next physician to speak to our members. Dr. Patel described the genetic components of vascular malformations. He also clarified the inefficient temperature regulation of some patients, noting that when the vasculature is compromised the inability to “dump heat” is created – resulting in being extremely hot in warm weather or extremely cold in cooler weather. The vasculature cannot dump the heat into the core of the body to keep them warm, and cannot dump the heat to the skin to sweat and cool the body. He also stressed the importance of being a “Mama Bear” encouraging parents to voice their concerns and verbalize when they do not agree with the doctor. He stated a good advocate is one that will stand up for their child and challenge a doctor.
Rafael Oliver, one of our members with CMTC, gave an excellent presentation educating parents on coping with vascular malformations in sporting activities. He covered the challenges of physical differences, pain, mobility, and depression. Rafael’s topics included how to choose the right sports, how to keep cool in the summer, proper nutrition and hydration, the use of compression stockings, physical therapy, and relaxation techniques. He also provided a swim clinic in the hotel pool, and gave each child, including siblings, a back pack filled with sports related goodies. Rafael was an incredible asset to our conference this year, and we hope to have him participate again in the future.
This year was the first year we had two physicians performing the clinical evaluations. This was an amazing impact on the assessment of each patient. They were educated on the dermatological features of their diagnosis, as well as the genetic components. Several parents expressed their appreciation for the doctors being so active during the assessment as they took their time and looked at all markings, even if it meant getting down on the floor to do so. Once again, we had some patients who received confirmation of their diagnosis, as well as those who received a new diagnosis. Nevertheless, the parents/patients were educated on each diagnosis, and given ample time to ask the doctors all the questions they wished to ask.
Another first for the conference, was the use of the conference app. An app was created to keep participants informed of various things, such as: the conference agenda – and where the general session and clinicals were being held, a newsfeed where participants could communicate and share pictures, family day info regarding where to pick up tickets – where we were having lunch – what time to be at the museum. This was a valuable addition to the weekend, and will be used again next year. The notification feature was a great way to keep everyone connected and informed.
The CMTC-OVM US Board of Directors will continue to make every effort to accommodate as many members as possible. Therefore, next year’s conference will be in a different location. The board is currently working on the 2016 conference, and plans to announce the location by fall 2015. Stay tuned, the annual conference will be coming to a city near you.