Bohring-Opitz Syndrome Foundation, Inc.

Annual Meet-Up

2017 2nd Annual BOS Family Meet-Up in Philadelphia

  Fourteen families from all over the US attended the Meet-Up this year

Fourteen families from all over the US attended the Meet-Up this year

The BOS Foundation hosted the 2nd Annual BOS Family Meet-Up in Philadelphia on July 29th. Fourteen families were in attendance and all had a wonderful time of fellowship and networking with others in the BOS community.

We were fortunate to have three of our Medical Advisory Board Members attend this year, a genetic counselor, and others who volunteered their time to make the event a success.

The day was full of fun activities for everyone including a petting zoo, face painting, and special visits from Wonder Woman and Superman. A photographer was also present to capture the day and all the wonderful memories. In addition, a catered lunch was held in the Black Lake Room.

A highlight of the day was the Family/MAB Panel Discussion. The three medical advisory board members: Dr. Wen-Hann Tann, Dr. Samantha Vergano, and Dr. Feng-Chun Yang sat on the panel. There were also three parents of kid’s with BOS: Tedra Tsesmilles, Lori Verlinghieri, and Rose Ross and a sibling, Anita Ross that also participated. There was an open Q & A session where attendees were able to ask questions and engage in the discussion.

 Family/MAB Panel members introduced by Laura Badmaev, BOS Foundation Board Member

Family/MAB Panel members introduced by Laura Badmaev, BOS Foundation Board Member

Anita Ross, sister of Rosemary who is an adult with BOS said, “she’s probably taught me about more things in life than anyone in the world, besides my parents, without saying anything to me."

A video of the panel discussion in its entirety is available on the BOS Foundation Facebook page here.

Dr. Wen-Hann Tann was also able to meet with several families to begin the process of information gathering for the BOS Patient Registry. More information can be found here.

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Here are some of our family member’s reactions:

“ I loved hearing from the parents with the older BOS kids. To focus on communication when the kids are young.’ -Annelies Koch

“It's always nice to walk into a room with people who just automatically understand and you don't have to explain your child. The meet-up is the one time I feel like a mom who is a "member of the club" and it feels good to be a part of something where my son and I fit in instead of standing out.” -Jill Morris

“Even though they all have the same diagnosis, they all have different challenges at different levels.” -Tiffany Berkey

“I absolutely loved the meet-up. Met amazing people. An experience of total acceptance and unconditional love.” – Berenice Chauncey

"The petting zoo was brilliant, the panel was amazing, I could go on for days as to how perfect the event truly was...I still can't figure out how you all manage to pull off such magic but I thank you all from the bottom of my heart." - Kate Sweigart

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This year, the Foundation received a Rare Patient Impact Grant of $5,000 from Global Genes. This grant allowed us to organize a large event like this for our community with no charge to attend. Gene Dx awarded a scholarship of $2,500 for members of the MAB to be in attendance as well.  We thank both of these organizations for their dedication to those living with rare disease, and in helping make our event a success.

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There were many businesses, vendors, and individuals that helped to make the 2nd Annual BOS Meet-Up a huge success. A special thank you to Gina Marie Photography, Danielle O’Driscoll, Peaceable Kingdom Petting Zoo, Pretty Princess New Jersey, Icing Smiles, Bailey's Blossoms, East Carolina Monograms, P&P Caterers, and Black Lake Room.

Also, a special thank you to Jesa Galloway, our Patient Support Chair, whom lead the planning and coordinating of the Meet-Up event. Jesa, along with our Co-Chair, Taylor Gurganus, work all year to make this event possible.

If you’d like to volunteer for the BOS Foundation, please contact us at info@bos-foundation.org.