From the Desk of the Executive Director BETH GORE, PHD, OLEY EXECUTIVE DIRECTOR Do you do this too or am I the only one? I consciously choose to live my life on purpose. Maybe that sounds strange, but I meet a lot of people who feel like they only have life happen TO them. I’m a person of intentionality. Sure, sometimes the unexpected waves of life knock me to my knees. After all, I’m the mother of Beth Gore six children who all have special needs. I’ve learned to expect the unexpected. But I also have moments between the waves where I can reflect and make course corrections. I once heard the saying, “The days are long, but the years are short” (author unknown). As that mother of six, and as the Oley Executive Director for just over a year now, I feel that in my bones. It’s why I have to intentionally reflect on the year point of view and not just the day-to-day grind. Annually, near the end of the year, I reflect on where I am, where I’ve been and where I’d like to go in the next year. I take a good, hard look at the wins and areas for improvement for my life. In November 2023, the Oley Board of Trustees gathered in Tempe, Arizona, the site of the Oley Annual Conference for June 29–July 2, 2024. We reflected on just that: The past and future of Oley and the nutrition support community.
The Past Year, 2023
Oley was involved in a lot this past fiscal year (October 1, 2022, to September 30, 2023). Some of the highlights include: • Annual conference. This was huge! We held the first in-person annual conference in four years. o Attendance—We were not sure people would still gather in person in a post-covid world. But they did. Nearly 400 people registered and 317 attended in person. o 40th—With Executive Director Emeritus Joan Bishop transitioning out, we focused on the 40-year history of Oley during the keynote address, presented by Joan and Oley Foundation Co-Founder Dr. Lyn Howard. o New activities—We attempted some fun, new traditions, like the fashion show and karaoke. Both were huge hits. We expect them to make a showing next year. o Financials—For most organizations, their annual conference is a money maker. Oley does not charge families and patients to attend the conference. Therefore, it has always been a big deficit to put on the annual conference. In 2023, our goal was to break even. And
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LIFELINELETTER
for the first time in Oley history, I’m happy to report, we did! Thanks to the generous support of our supporters, attendees, partners, exhibitors and sponsors. o Hope you’re making plans to join us in Tempe, Arizona, and get Connected.
The Oley Foundation’s 38th Annual Consumer Conference
Connected
June 29, 2024 | Tempe, AZ
Oley 2023, Gateway to the Future, St. Louis, Missouri • Education. Oley presented many powerful and meaningful educational opportunities. Just to highlight a few: o The patient perspective symposium at ASPEN, “Partnering with Patients: An Ace Up Your Sleeve.” o Webinars/Mini-Meetings on the topics of insurance, blenderized tube feeding, mental health, intestinal failure, tube feeding/infusing at work and school. o Four LifelineLetter newsletters with clinical highlights and patient perspectives. • National advocacy. The theme of 2023 seemed to be mitigating continued shortages. This includes the on-going enteral formula shortages as well as parenteral nutrition shortages, “the worst in decades,” and device supply chain challenges. Oley was involved in congressional conversations, spoke with payors at a payor summit and was invited to have a seat at the table at a supply chain summit. Oley continues to serve on the advisory board for LIFT-ECHO. Oley staff and members participated in the Digestive Disease National Coalition (DDNC) Spring Public Policy Forum and Capitol Hill visits as well as DDNC’s Fall Forum. Director of Advocacy and Outreach and LifelineLetter Editor, Lisa Metzger, served as the DDNC vice chairperson. Oley cosigned community letters in support of the Safe Step Act, sent letters of support to state Medicaid offices on policies, and continues to be part of the Patient and Providers for Medical Nutrition Equity Coalition. • Community. The Oley community is unique as the only group that bridges patients to and from nutrition support fellow patients and caregivers, clinicians and industry. We give as many opportunities as we can for these groups to interact in meaningful and intentional ways. Some of the
