The 2018 (PPA) Preemie Parent Alliance Summit was a huge success. It was held in Falls Church, VA this year and I had the honor of presenting at two sessions. Inova Hospital was gracious enough to lend us space to host our presentations and The Hyatt House was also gracious enough to allow us to hold our pre-conference and networking reception. Thank you to both venues!
I look forward to this conference every year. It feels like a big family reunion. That probably sounds strange since none of us are actually related, but we are a family nonetheless. We all share a sisterhood. It’s one that none of us expected or would have ever asked for, as it’s filled with pain and loss, but we all traveled down this same dark road and came out the other side with a desire to help other families who are forced to take the same turn.
My first PPA Summit was in 2014 and I have never missed one since. I don’t attend for the purpose of adding something to my resume or selling books (although selling books is a bonus!), but I attend so that I can reconnect with the women who have helped me heal over the last few years and to connect with new members who need to feel as welcome as I did four years ago. Every person who attends the PPA Summit is giving back to the preemie or NICU community in some capacity. Some members run their own nonprofits that support NICU families or research that is needed to help save lives. Some members make and sell products inspired by their own NICU journey. Some members have written books that are meant to help others who are suffering through a high-risk pregnancy or premature birth. And other members are brand new and don’t quite yet know how they want to contribute to the PPA community but just know that they are called to make a difference and make something positive come out of their experience.
This year’s summit was jammed packed with speakers and activities. I even attended the pre-conference session on public speaking, called “Own the Room”, by Deborah Shames and David Booth. I learned a lot about myself and finally realized that I had a lot more to say than I’d been saying all along during my presentations.
The evening “Networking Welcome Reception” was a lot of fun and I was surprised to win and was presented with an award called “The Spirit of PPA”. I was honestly surprised! PPA presented me with a beautiful sign for receiving the award. It was pretty special!
Kelli Kelley of Hand to Hold and Kristy Love of The National Perinatal Association were also presented with The Founder’s Award for Service to PPA by Keira Sorrells.
The reception is all about networking with people who you’ve been meaning to connect with and just have not had the opportunity. Of course there are some hors d’oeuvres and cocktails that help break the ice!
Day two was action packed. It started with the New Member Breakfast. This is where the new members have a chance to ask questions about anything they want. It is a much smaller session and this allows for everyone to have an opportunity to speak freely.
Once the breakfast was over, everyone moved on to the auditorium for the President’s Welcome. Keira Sorrells is the PPA president and she opened up the summit with some very inspirational words. Keira delivered triplet girls at 25 weeks gestation and one of her daughter’s lost her life at 14 months old due to complications of her premature birth. This loss inspired her to start her first nonprofit to support NICU families and then form the Preemie Parent Alliance. She is such a great leader! Next we listened to a presentation called “Engaging with Industry” by Carolyn TenEyck (Prolacta), Angela McCoy (Shire), and JoAnne Nabozny (The Wellness Network). They did a fabulous job giving us ideas on how to build industry partnerships. After this we got to listen to Deborah Shames again, as she presented “The Power of Persuasion”. She shared that anxiety affects 90% of the population, and she gave us some strategies on how to address this and be seen as a leader. After a break we listened to Molly Gimmel from NAWBO (National Organization of Women Business Owners) give us a history of women as leaders in industry in her presentation “NAWBO’s Legacy of Advocacy”. Some of the history is unbelievable.
My first presentation was right after lunch and it was called “Evolution of Our Work”. I was part of an amazing panel of PPA members and we all shared how we started our businesses, nonprofits or written our first book and all that has transpired since. Our panel members included Nick Hall of Graham’s Foundation, Kelli Kelley of Hand to Hold, Brittany Lothe of Wills Way Foundation, and Christine Yang of The Tiny Miracles Foundation. I learned quite a bit about myself as I spoke. It’s pretty amazing how much my life had changed in the last six years. If you would have asked me six years ago, after almost dying during my daughter’s delivery, how I saw my life in six years- I NEVER would have been able to predict all that I have learned and accomplished and all those I have helped support. I started out writing a book to help other families suffering through a high-risk pregnancy and premature birth and ended up writing for magazines, websites, journals, and writing another book- and also speaking in front of Congress and the Senate and starting a business where I go to speak to help advance maternal and neonatal health. Wow! I never really sat back and thought about all that I have accomplished. I am truly proud of myself and love that I have given support to those in need. That’s difficult for me to say because I do it all for those in need and not for myself.
My second presentation was very soon after the first and it was called “Preemie Parent Collaborations to Educate, Advocate, and Spark Local Action!”. This time I had the pleasure of speaking with Deb Disenza of Preemie World and Jenné Johns, author of Once Upon a Preemie. We shared how we have successfully collaborated with each other and with many other PPA members and various stakeholders and industry in the maternal and neonatal health space. We truly believe that we can all accomplish more and support more families if we try to help each other reach our goals. The last twenty minutes of our presentation was my favorite because we had the attendees break into groups and discuss ways that they could collaborate together. I hope some of these collaborations discussed will come to fruition.
This was the last presentation of the day and then we all went to dinner together. We had a blast blowing off some steam and laughing with each other after such a serious day.
Members who were feeling a bit emotional, stressed, or just tired were able to take a break in the The Wellness Room, equipped with essential oils, adult coloring pages, candy, music and more. I think next year we need to add a personal masseuse.
Our final day started with a members only meeting, where we all shared various projects we are working on and how we can help each other. The first presentation was “Bioethics & Patient Advocacy: Making Meaningful & Responsible Contributions” by Lisa Stewart & Sarah Vittone. After a break we had two simultaneous sessions and we we all split up to sit in on them. They were Bold Leadership by Kelli Kelley and Harnessing the Power of Personality to Create a Culture of Innovation in Your Organization by Ali Dunn. Both of these presentations were full of excellent tips, tricks and wisdom and the attendees got a lot out of what was shared.
There was only one presentation left after lunch and that was A Focus on Maternal Mental Health Tracy Pella of Connected Forever & Stacey Porter of The Tangerine Owl Project. Unfortunately I had to miss the majority of this one because I was assisting the videographer with finishing up his last video segments.
Did I mention that we had a videographer this year? His name is Daniel Burdick and we want to thank him for all of the work he did recording both our main presentations and accommodating members who wanted some of their own personal videos recorded for their organization’s social media sites.
I’m sad to have missed the last presentation because both of these women have so much to share and I know that I would have learned a lot from their presentation. They are beautiful and strong women who have suffered loss and have dedicated their organizations to helping others who have also experienced a loss like theirs.
Keira ended our 2018 PPA Summit with some heartfelt and inspirational words. As always, I left the PPA Summit feeling energized and recharged and ready to get to work on new projects and more writing, and I spent my flight home brainstorming and organizing my ideas. I can’t wait for the summit next year! I am currently working on difference projects with Nurtured by Design, The Morgan Leary Vaughan Fund and Keep Em Cookin.
I want to thank every member that attended the summit. Besides the fact that it was great to spend time with each and every one of them, every person contributed to conversations and collaborated with one another in ways that will remain in our hearts forever. Members who attended the 2018 Summit include Connected Forever, Families Blossoming, Graham’s Foundation, Hand to Hold, Holding Tiny Hands Foundation, Keep ‘Em Cookin’, Lily’s Hope Foundation, Me Two Books, NEC Society, NICU Helping Hands, National Perinatal Association, Nurtured by Design, Once Upon A Preemie, Preemie World, Project Preemie, Speaking for Moms & Babies, Inc., The Morgan Leary Vaughan Fund, The PPROM Foundation, The Tangerine Owl Project, The Tiny Miracles Foundation, Twin to Twin, Will’s Way Foundation, National Coalition for Infant Health, NICU Parent Club and Silvie Bells.
I have to give a shout out to Farrin Moreno who has been researching all aspects of NICU care for her graduate degree. I know that she is going places and I look forward to seeing her work. Farrin shared with me that her and her premature daughter read my first book and it inspired them both. Good luck to you Farrin!
You can click HERE to view information on all of this year’s speakers.
The 2018 PPA Summit would not be possible without our generous sponsors, including Prolacta Bioscience, Shire, The Wellness Network, Sage Therapeutics, and Drager. Thank you for all of your support and recognizing that we are all share a common goal and that the parent voice is critical to progress in maternal and neonatal health.
Thank you to Cristal Grogan for all of the behind the scenes work you did to make sure the summit ran smoothly and thank you to the summit planning committee for doing such a great job with everything!
A summary of the conference would not be complete without mentioning the baby that joined us! Brittany Boet (of Bryce’s NICU Project) brought her adorable little girl along with her and we all took our turns holding her. This is exactly what we all needed. Who is going to bring their baby next year?
Thank you Dr. Sue Hall for taking so many beautiful photos and capturing so many special moments throughout the conference.
The overall 2018 PPA Summit Agenda can be found HERE.