Bohring-Opitz Syndrome Foundation, Inc.

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Bohring-Opitz Syndrome Foundation: 2016 Year in Review

The Bohring-Opitz Syndrome Foundation had a successful year in 2016.  Founded just two years ago in 2015 by Carrie Hunsucker and Taylor Gurganus, both moms of children with BOS, the Foundation continues to be a completely volunteer run 501c3 non-profit organization.  The board of directors is composed of parents, family members, and close friends of those with BOS.

Carrie is Chair of the Board and heads the Research and Medical Advisory Board Committee, while Taylor serves as Vice-Chair and head of the Awareness Committee.  Each dedicates their time and talents to improve the lives of those with BOS and their families.

In the past two years, the Foundation has established a Medical Advisory Board, awareness initiatives, and patient/parent advocacy and support for families living with BOS.  All of these would not be possible without the donations and fundraising events supported by our growing BOS community.

One of the most exciting events of 2016 was the first BOS Foundation Family Meet-Up in Philadelphia in August.  Jesa Galloway, Board Secretary and head of Patient Support, led the organization of the successful event.  Fourteen families made the trip to enjoy a day of fun and an opportunity to exchange information and ideas about living with BOS.  Two Medical Advisory Board members, Dr. Bianca Russell and Dr. Wen-Hann Tan, also attended and shared in the experience.

There was plenty of entertainment including a face-painter, Lily the Therapy Dog, and a Live Entertainment Balloon guy. The 2nd Annual BOS Family Meet-Up is scheduled for July 29th in Philadelphia and we look forward to another successful event.

Patient Support is designed to offer tools for parents and caregivers to be the best caretaker to their child and themselves.  Beside the Family Meet-up, Family Support includes a new to BOS welcome packet, birthday club, and the BOS Connection Group on Facebook.

In 2016, the Patient Support committee sent out 19 welcome baskets, 4 remembrance gifts, and 28 families received g-tube pads. In addition, they sent out 18 support gifts via postcard, phone calls, and balloons, etc.

The BOS Foundation was honored to receive a Rare Patient Impact Grant in 2016 from Global Genes.  Sandy Dreis, Board Advisor and past strategic partnership coordinator was instrumental in writing the grant application.  This funding opportunity is awarded to make a tangible difference in patients’ and caregivers’ lives through inspiring projects and vital support services. 

The Foundation will use the money awarded for the Family Meet-Up this year.

Members from the Foundation were also in attendance at summits for the Rare Disease community during the past year.  Jesa Galloway and Danielle Palmer, Board Treasurer, attended the NORD Rare Summit in Arlington, VA this past October. This opportunity enabled them to network with many rare patient advocates and families, as well as pharmaceutical companies, FDA representatives, and others in the industry.

Carrie Hunsucker attended the 2016 Global Genes Rare Patient Advocacy Summit in Huntington Beach, California in September.  She attended seminars in the “Patients’ Role in Drug Discovery” track and learned how to better motivate BOS research. 

Attending conferences and summits are an excellent opportunity for the Foundation to network with those in the rare disease community and learn best practices for our BOS community.

The BOS Medical Advisory Board grew under the leadership of Carrie Hunsucker, adding four new members this past year.  Genetic Counselor Ben Helm, Dr. Samantha Vergano, Dr. Feng-Chun Yang, and Dr. Tyler Pierson joined to support the Foundation and its patients and families. 

Another exciting project for the BOS community is a Patient Registry lead by Dr. Bianca Russell and Dr. Wen-Hann Tan.  The Foundation is assisting with the development of this exciting project along with other BOS advocates.  Be on the lookout for more information.

Taylor Gurganus leads Awareness for the Foundation and established an Awareness Committee in 2016.  The 2nd Annual BOS Awareness Day held on April 6th, 2016 was a success thanks to many in our BOS community.  Taylor created a BOS ribbon of blue and gold.  Several ribbons were made and distributed along with activities such as a downloadable coloring page and local events to mark the day. 

The Awareness Committee also manages all social media sites for the Foundation which saw growth in 2016.

Taylor also created a BOS Family Photobook that includes stories and pictures of many with BOS.  These are now included in the Welcome Packets for those new to BOS.  They are also available for purchase through Mixbook.  If you are interested in purchasing one, please contact Taylor for more information at taylor@bos-foundation.org.

Taylor started the BOS Birthday Club for our BOS children and angels to receive a gift from the Foundation on their birthday beginning in January of 2017. The Awareness Committee also handled Fundraisers during the year.  This is vital to the Foundation as it helps fund our initiatives.  In 2016, fundraisers included ornaments and t-shirt sales.

Our larger BOS community has been instrumental in the success of the Foundation.  Individual donations and local fundraisers have contributed to our overall growth.  One example was a t-shirt fundraiser and Chinese auction lead by Tedra Tsesmilles, mom of a child with BOS.  This raised over $1,000 for the Foundation.  

Here is a look at what was raised and what the funds supported in 2016:

Ornaments: $5,494.36 Funds raised supported administrative items and the ACMG Conference

General Donations: $3,166 Funds supported the Patient Support Initiatives and Summits

T-shirt Sales $854.88 & Donations $359.62 Funds supported awareness items

T-shirt Meet-Up Sales $854.88 & Donations $359.62 Funds  supported 2016 Meet-Up

*Donations and Fundraising increased by over 70% from 2015.  

Danielle Palmer serves as Board Treasurer.  She also attended the NORD summit and manages the finances of the Foundation.

Laura Badmaev joined the board in 2016 and has been active on the Research and Medical Advisory Board Committee.  She has worked closely with physicians and other rare disease organizations to learn best practices in the field of research and non-profit organizations.

At the end of 2016, Michelle Parke Doty joined the Foundation Board of Directors to take over strategic partnerships and head communications.  She hopes to build the blog and communications while developing partnerships with others in the rare disease community.

We are always open to ideas and suggestions from our wonderful BOS community. Thank you all for an amazing year and we look forward to an even better 2017!  Please contact us at info@bos-foundation.org