My second Oley Conference is behind me- and again I was blown away by the support and companionship that proves strong through the community of those on nutrition support. I love the daily interactions, inspiration and love that surrounds the breakouts and meetings…old friends, new friends and life-changing connections.
This year, the opening ceremony was especially moving. Maybe this is because over the past year (and in each passing day) I realize the amount of strength that transcends our population- my awe only grows stronger. Award winners with smiles and tears telling their stories- beautiful. This year a very pleasant surprise was a speech by Dr. Stanley Dudrick, the Father of parenteral nutrition. I was blown away by the pushback that he received and his selflessness in the development of his therapy, an unfortunate theme that occurs frequently in the pioneering of cutting edge medicine. He didn’t hold back his struggles and I was awe-struck with that- especially presenting to a room of people with overwhelming challenges of our own. His story is one of inspiration- he’s saved many many lives as the result of his science and medicine- including Camden’s- one of my favorite moments to-date was being able to thank him for that (of course he wouldn’t take credit)- a wonderful man- a hero. (Google him- there is a plethora of information available- and he’s more than deserving of his own future post).
The rest of the week was orchestrated SO well- break-out meetings, presentations, the sharing of evidence-based information and COMPANIONSHIP. Oley brings together the power of the community, consumers, caregivers, vendors, etc. all empower each other over the course of days, and it’s an incredible experience to be a part of. I was very proud to see Boston Children’s in attendance this year, Camden’s rockstar team.
I can’t tell you what it’s like to share our story with a family who is new to the community, to offer them hope and resources or how it feels to speak to an adult with short bowel syndrome to gain insight into the physical and emotional impact that the disease has on Camden- the impact that he’s too young to share OR to learn of the new products and resources available to families over the past year- because people have committed themselves to progress for this population. It rocks.
If you are a member/supporter of Oley- I’m glad that you’ve found your way to them, I certainly am. If you are a citizen of the complex GI community and rely on nutrition support and haven’t heard of Oley- you’re missing out on such a RICH and SUPPORTIVE resource. I hope that you’ll visit their website to learn more about all that they offer and reach out to their incredible staff and volunteers to learn more. Next year Camden will be 3 for the meeting and the value of the organization will continue to grow as he attends the meeting with us and meets other ‘tubies’ like himself and relates to others who share a story similar to his… support makes for success ❤