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2016 Global Genes RARE Patient Advocacy Summit

10/15/2016

1 Comment

 
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PictureMarie, Erin, Shannon, and Myo representing MTM-CNM Family Connection at Global Genes 2016 RARE Patient Advocacy Summit in Huntington Beach, CA
Members of our MTM-CNM Family Connection Team recently attended the 2016 RARE Patient Advocacy Summit, hosted by Global Genes, September 20th & 21st in Huntington Beach, CA.   With the beautiful backdrop of palm trees and the Pacific Ocean and in an atmosphere of innovation, energy, and alliance, patient advocates from the greater RARE disease community came together to learn from each other and from the scientists, researchers, philanthropists, artists, and others working hard to support and spread awareness on behalf of our communities.  

One of the primary takeaways from this conference was that although each individual rare disease community is small, there are over 7,000 identified rare diseases with millions being affected. That means almost everyone, whether aware of it or not, knows someone RARE. Sadly, only 5% of these diseases currently have an FDA-approved treatment. However, this is where the cumulative power of RARE can make a difference, and Global Genes has really stepped up to the plate in providing support and learning opportunities for everyone at every stage by leveraging the strengths of each community's advocates.  

​During breakout sessions, RARE advocates who had succeeded in particular areas, such as community building, establishing advisory boards, fundraising, soliciting volunteers, utilizing social media to spread awareness, coordinating longitudinal studies, and pushing forward on the path of clinical trials, eagerly shared what had worked and what had not, often opening up the floor for feedback and participation. The roles of teacher and learner were fluid and dynamic as advocates spoke to their strengths and then sought mentorship in areas needing to grow. So speakers in one round of breakouts would be audience participants in the next round.  

For us, it was valuable to glean knowledge and insights from other communities that are further along in clinical trials, and we were happy to share our expertise with other rare disease groups that are just getting off the ground or planning their first family conference. The conference presentations were informational, the spirit of collaboration palpable, and the universal commitment to work until all rare diseases are curable, undeniable!  Galvanized by this positive, exhilarating experience, we came away more committed than ever to continue in our mission to connect MTM & CNM families to essential resources, active research, and life-enhancing relationships!

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MTM Families with Barbara Wuebbels, VP of Patient Advocacy Audentes Therapeutics. Left to right: Daniel McDermott, Erin Ward, Barbara Wuebbels, Christi Rocha, Marie Wood, Diana Manny, and Shannon Mashinchi
At such an important time for our community, at the threshold of clinical trials, we encourage all family members to learn everything we collectively can about moving into clinical trials, facilitating the liberation of medical data for researchers, collaborating with pharma industry to streamline the process of drug approval, and all becoming patient advocates for what is best for our loved ones.  We were thrilled other family members from our community also attended the summit and together we were empowered with valuable information and resources to support our community’s journey.  We also had an opportunity to connect with Barbara Wuebbels, VP of Patient Advocacy Audentes Therapeutics, and a leader in patient advocacy in the pharma industry.  For those that were unable to attend but would like to learn more, please visit the Global Genes website to view videos of the summit presentations and also check out the other valuable resources available for all rare communities.
Myo, our MTM-CNM Traveling Turtle, also made the trip and made his rounds at the summit, meeting patients, family members, researchers, pharma industry and government agency leaders.  We had an opportunity to share with other patient groups how Myo travels around the world with the goal of connecting our community and spreading awareness of MTM & CNM.   Myo was happy to meet some new friends and also did some advocacy work as well, supporting the #CURESNOW campaign through social media.
A month prior to heading out to California, we posted our  plans to attend this wonderful summit on Facebook with an open invitation to meet with any families in the nearby vicinity who were available. Two of our local families--parents of two MTM angels--came to visit us at our hotel for an all-too-brief but deeply treasured time of sharing, reminiscing, and encouraging. There were also lots of baby cuddles, which was the sweetest part of all! We were so happy to have a chance to connect while we were in the area.  There is nothing like spending time with MTM & CNM Family! 
     
Our team's experience at the 2016 Global Genes Patient Advocacy Summit was outstanding and we were grateful for the opportunity to participate in this RARE advocacy conference!  
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Local MTM families, including Nancy and Maya Serafano (left) and Renee and Randy Lyde (right) were able to stop by for a visit with our team
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1 Comment
Gay Minnesota link
1/30/2021 01:13:52 am

Thhank you for sharing this

Reply



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