2017 Annual Family Event and Global Conference Report
The annual conference began on Friday, July 21st, with our Family Event. Due to this day typically being a travel day for families, the Board of Directors chose to host a pizza/pool party at the hotel. This gave parents time to relax and not think about dinner, and the kids got to burn off some energy after a day of travel. With the temperature near 100 degrees Fahrenheit, and the heat index around 107, a dip in the pool was a refreshing experience. Moreover, it permitted those who characteristically cannot tolerate the heat, to enjoy the fun as well. All families participated in this event, it was a huge success and will be repeated in the future.
On July 22nd, the Global CMTC-OVM US Organization held their annual conference. The Airport Courtyard Marriott was our destination in Memphis, Tennessee. We are excited to report that we had 11 states and 3 countries represented this year. Check-in began at 7:45am with a continental breakfast. During this time, each family received their conference booklet, name tags, cards for personal menu selections, and HIPAA forms. Last year we adopted the practice of providing HIPAA documentation for our families, in compliance with federal laws. Our booklets this year were professionally printed, and included information, such as: Conference Agenda, Board of Directors bios, Physicians bios, Guest Speakers bios, Other Possible Diagnoses, Finances, Fundraising, Family Engagement, Awareness, Advocacy, and space for note taking.
At promptly 8:30am, our President Rebecca “Bec” Gallis got the conference started with an overview of the organization. Bec stressed how being rare has brought us together as a family, continuing our motto: We’re all a little rare; but, when we fall into mutual rareness… We Call it a Family. Our attending physicians, Dr. Joan Tamburro and Dr. Rocio Moran, were welcomed into our family as well. After the introduction of the Board of Directors, everyone was given the opportunity to introduce themselves. Bec’s presentation covered the topics of how we became a formal non-profit organization, our demographics in the USA and internationally, other organizations where CMTC-OVM US holds membership, past conference locations, 2017 conference participation, and Day of Awareness/Lights of Hope.
The website was covered extensively. As we feel it is important to provide members and visitors to our website with the best possible security, it was explained how we are a secure site with Secure Socket Layer Encryption (SSL) certification. A justification of our medical disclaimer was also provided. This disclaimer is in place, not because we question the information provided, but as a notice that the information is intended for educational purposes, and should not substitute the medical advice, diagnosis, or treatment of a licensed practitioner. Other items brought to attention on the website included; our elite Medical Advisory Team, Vascular Anomalies Clinics (VAC) listed by state, Rare Toolkits courtesy of Global Genes – Foundation Alliance, Nursing Diagnoses, our brochure, and much more. Also, the world map that was recently introduced on our website. This map is also a secure site, where those wishing to participate can enter their information to designate their general location and diagnosis. It was stressed, that the Global CMTC-OVM US Organization does NOT enter anyone’s information. Individuals can enter as much or as little information as they wish. You can remain strictly anonymous, and we do not store your personal information on our server, nor does the mapping website. Finally, Bec revealed approximately a dozen websites, where you can find a link to the organization’s website. Thus, if you were doing research on CMTC or vascular malformations and you entered one of these sites, the Global CMTC-OVM US Organization would be listed under patient organizations.
Detailed financial information was provided by Treasurer Tabatha Broussard. Once again, it was explained how the organization’s operating capital comes directly from paid memberships, fundraisers, and donations from the public as we do not receive any government subsidies. She outlined the cost of the conference, in addition to other organizational expenses. Tabatha informed those in attendance, how being members in good-standing they were eligible, as per our bylaws, to receive a financial status report if they wished. She continued her presentation giving the current fundraising options. The color changing t-shirts, bracelets, Amazon Smile, and Andrea West’s (Fundraising Chairperson) event have been very successful. In addition, Tabatha outlined our involvement in other conferences, and how most of those expenses are covered by travel scholarships offered by each hosting organization. Any remaining expenses are covered by the CMTC-OVM US president, not the organization.
Our morning continued as our attending physicians addressed the medical issues of dermatology and genetics. Dr. Joan Tamburro returned this year. Her expertise as a leading dermatological specialist at the Cleveland Clinic, proved once again to be extremely beneficial to our families. In addition to her position in the dermatology department, she is also an exceptional leading member of the VAC (vascular anomalies clinic) team at the Cleveland Clinic. This particular VAC team consists of 25-30 physicians, working together to sustain patient quality of life. Dr. Tamburro’s educational presentation covered the importance of achieving a firm foundation within health literacy. This foundation assists in alleviating confusion and misinterpretation within medicine. Health literacy is affected by the health system, health outcomes and costs, education systems, culture, and society. She believes patients and families struggle to get the healthcare they need for an ultra-rare diagnosis, such as CMTC. Therefore, her information was directed toward the various pathways of health, because at this moment we do not have one specific pathway to direct the care for patients with CMTC, as the disease pathway has not been determined. For now, until research and evidence-based care plans are created, care is attentive to monitoring and treating the symptoms. She continued, as in preceding years, to stress the importance of an interdisciplinary team, for example a VAC team as this is where precise healthcare occurs for these patients. Dr. Tamburro stated it is normal to have been told different things pertaining to a vascular malformation diagnosis. This is mostly due, to how rare these conditions present, the fact that doctors are still learning, and living in different locations can affect medical practice.
New to our team this year was Dr. Rocio Moran, who is the Division Director of Genetics and Genomics in Cleveland, Ohio. Dr. Moran’s informative presentation covered the intricate concepts of genetics in vascular/capillary malformations. She discussed the importance of a diagnosis, not only to a family seeking answers, but also to physicians. The lack of a diagnosis can lead to unattainable treatment plans, unwarranted family/patient anxiety, and much more. Dr. Moran explained how a germline and/or somatic theory in diagnoses such as CMTC, can make a huge impact. While a germline cell mutation supports the idea that CMTC could ultimately be passed onto an offspring. Somatic cell mutations, recombinations, and other genetic changes will not be passed to offsprings. Therefore, by this understanding and the evidence of cases where only one child diagnosed with CMTC in a set of identical twins exists, the theory of CMTC being a somatic mutation is evident. She also shared that people should not be discouraged when a doctor states, “I don’t know.” This statement reveals transparency. And, when a doctor makes that statement, rest assured they are the ones who are more likely to seek the answers. We are pleased to announce that Dr. Moran has also accepted our invitation to join our medical advisory team. We look forward to her returning to our conferences in the future.
Following the doctor’s presentations, came the session titled, “What’s on Your Mind?” During this time, Dr. Tamburro and Dr. Moran answered approximately 40 questions provided to us prior to the conference. There was a wide range of questions, and it was exciting to watch these two doctors brainstorm and intertwine their medical disciplines to answer these questions. These questions and answers will be made available on the website ASAP. This session will definitely be repeated at upcoming conferences.
Both Dr. Moran and Dr. Tamburro are looking forward to becoming more involved with the Global CMTC-OVM US Organization as we move forward!
Following lunch, both physicians began clinical evaluations that extended through the day and evening, finishing the last one at 10pm. Our medical team is focused on providing a thorough evaluation, and leaving no question unanswered. Each family also received a professional counseling follow-up as soon as they left the doctors.
Secretary Brandy Lockridge, gave her presentation that concentrated on Collaborating with Schools. She began with defining IFSP (Individual Family Service Plan) for infants and toddlers, and IEPs (Individualized Education Plan) for individuals age 3 through 21. IDEA (Individuals with Disabilities Education Act) is a law ensuring services to children with disabilities and special needs throughout the nation. It ensures public agencies provide early intervention, special education, and related services. Brandy continued to educate on the eligibility requirements for the 504 Plan versus the IEP. While both require a child to have a disability, she stated there must be a negative impact on academic achievement or functional performance for the child. The IEP also covers the need for specially designed instruction. Furthermore, the 504 Plan lists accommodations a school will provide. Brandy stressed the importance of knowing your rights and the rights of your children.
Dr. Seth Kastle, who is the organizations Family Engagement Coordinator with his wife Julia, gave a presentation on Volunteer Engagement in the Non-Profit Sector. Seth shared their family’s story of the uncertainty, the unknown, and the relief brought forth by being part of a community such as the CMTC-OVM US Organization. He went on to expressed how we grow together as we learn more about a diagnosis, and when a diagnosis changes. He continued by stating that engagement is how our growth as a family or community occurs. Seth explained how the board is comprised of parents who are medical professionals, accountants, teachers with different strengths. He also identified how you as members, also have strengths that can guide you to benefit the organization and ultimately yourself. Dr. Kastle shared what we need as an organization, and how we welcome input and assistance from our members. While becoming engaged within a global organization can be overwhelming, Seth introduced ideas as to how our members can help, by also engaging with those within their local communities at home.
It was a pleasure this year to have Jenna McNair, a representative from Path International, join us to educate families on the benefits of therapeutic horseback riding. Jenna informed everyone how this program teaches riding skills, and uses equines to contribute positively to the cognitive, physical, emotional, and social well-being of individuals with special needs and disabilities. She continued by stating horses do not judge, riding and working with horses encourages independence and fosters confidence. Path International was founded in 1969. Education is the foundation of this organization. They are an industry leader in best practices, all instructors are certified and required to complete CEU’s annually, and they promote mandatory safety standards with member and premiere accredited centers. Jenna invited everyone to visit Trinity Farm before traveling back home, to experience and interact with their horses. A few families took her up on the offer, and had a great time.
Elisabeth Hodges addressed the magnitude of healthy living through nutrition, and how one simple change can make a positive impact on you and your child’s life. The information Elisabeth shared was not for the purpose of selling a product. But, to educate on an easy, simple concept that can benefit your quality of life in addition to improving vascular health. As we can often be so busy, we find that a hamburger from a fast-food restaurant is convenient; however, it is not a healthy choice as we all know. Elisabeth introduced us to a product called, Juice Plus. This is a product that can bridge the gap between what we should eat, and what we actually eat. Juice Plus is referenced in medical and scientific journals with evidence-based research facts. Journals where you can find these facts includes: The Journal of Pediatrics, Skin Pharmacology and Physiology, Journal of Clinical Periodontology, Journal of Nutrition, Medicine & Science in Sports & Exercise, and many more. As over time people are becoming more health conscious, there were several individuals interested in this program.
Nursing Diagnoses was the next presentation in the afternoon. Our President “Bec” gave the explanation of what a nursing diagnosis involves. Many people do not realize that a nursing diagnosis even exists. Whereas a medical diagnosis is given by a physician, and never by a nurse; a nursing diagnosis is by a nurse and not a physician. A Nursing diagnosis is defined as a clinical judgment about individual, family, or community experiences/responses to actual or potential health problems/life processes. It provides the basis for selection of nursing interventions to achieve outcomes for which the nurse has accountability. Bec covered 5 nursing diagnoses related to CMTC comprised of: Risk for Caregiver Role Strain, Disturbed Body Image, Activity Intolerance, Impaired Physical Mobility, and Chronic Pain. These diagnoses described related factors, defining characteristics, actions and interventions a nurse would suggest and/or perform. You can find more information regarding Nursing Diagnoses on our website under the Resources tab on the homepage.
Our last session of the day was titled, “What’s Your Journey?” Bec transitioned into this session sharing her family’s journey with Ellayna. The struggles and hurdles they faced, the challenges of dealing with the unknown, the realization of knowing their precious child required stimulation, bag and mask ventilation, endotracheal tube ventilation, cardiac compressions, and oral and tracheal suctioning at birth. As well as living through the horror of being told Ellayna may not see day 2. Bec shared the list of diagnoses Ellayna has received to date, in addition to her multiple weekly therapy sessions. As the Gallis family’s portion of this session came to a close, it was time for others to share their journeys. Families were shown 4 images, a road closed/detour sign, a city highway where the car lights represented a fast pace, a treacherous road on the side of a mountain overlooking a cliff, and finally a lonely road in the middle of nowhere. They were asked the question, “Which one of these describes your journey?” One by one, families shared their journey. It was truly a time where we laughed together and cried together. This session quickly became a touching, moving, personal, emotional experience for all.
During all of this, we were fortunate to have a volunteer for our kid’s room. We would like to thank Heather Parke for devoting her day to watching over our kiddos. Their room was filled with books, board games, coloring books with crayons and markers, a large screen to watch their favorite movies, and much more.
We returned to a conference app this year, and it was amazing. Prior to the conference, we used the app to provide instructions for the hotel shuttle from the airport. As the location for the conference was hundreds of miles away from where board members live, we had to wait until we arrived to have answers to a few questions. The app created a way for us to send notifications with last minute details once we arrived on site. It was also useful during the clinical evaluations. To permit families to participate in the ongoing presentations, each family was paged via the app to report for their appointment. A wonderful tool that will be utilized again.
As you may know, our conference location is a different city each year. Therefore, in an effort to accommodate our members, the board is currently searching for our 2018 location. We may be coming to a city near you!
The conference videos will be made available in the members area of the website as soon as possible. Thank you to everyone who participated in this year’s conference. We look forward to seeing you again next year!!