8 minute read
From the Desk of the Executive Director, Beth Gore, PhD
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 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 Consumer 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 annual conference in four years.
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.
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.
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.
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 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.
Hope you're making plans to join us in Tempe, Arizona, and get Connected.
Education. Oley presented many powerful and meaningful educational opportunities. Just to highlight a few:
The patient perspective symposium at ASPEN, “Partnering with Patients: An Ace Up Your Sleeve.”
Webinars/Mini-Meetings on the topics of insurance, blenderized tube feeding, mental health, intestinal failure, tube feeding/infusing at work and school.
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 programs we run for patient to patient include information requests, our Oley Ambassador Network, the Enteral Donation Program and various support groups.
Innovation. We launched the Emerging Innovator Program and have our first two partners: FreeArm and Butterfly Pig. Click here to learn more about the Emerging Innovator Program.
Staff. Oley is pleased to announce we have hired Alaina McCormick as the new Director of Development and Communications. She has both personal and professional relationships within the home nutrition support community and has been connected with Oley since 2005.
Board members. Due to the transition of the Executive Director and all Oley officers in Oley’s fiscal year 2023, the decision was made to hold off on adding more board members to the mix. We are pleased to announce the incoming board members, officers and advisors as of October 1, 2023 (see photo above). Click here to learn more the Oley Foundation Board of Trustees.
We also did not meet some of the goals we had set for ourselves. Times were tight in fiscal year 2023 for donations. By tightening our belt and frugal spending, we were still able to come out of it with a balanced budget.
Staff changes caused some unexpected delays in programs we were hoping to launch and improve during 2023. But the staff we did have were willing to work extra hours to make sure we did not fall even further behind. We believe we have a great staff in place.
We had overly ambitious goals in terms of a timeline for upgrading our website. Due to unforeseen challenges, we had several delays in technology upgrades. We now feel like we have a more realistic timeline and the staff in place to pull this off.
The Future Year, 2024
The Oley Board of Trustees has set two main priorities for fiscal year 2024:
1. Annual conference. Oley staff was given directions from the board to make 2024 the best conference ever. We were given the following sub-priorities:
a. Record number of patient and caregiver attendees, especially first-timers
b. Record number of travel scholarships
c. Make money during the conference
2. Technology, communication and infrastructure modernization.
a. Our website is in need of updating. We have secured the contract to upgrade and will begin construction on that ASAP.
b. You’ll also see continued upgrades on things like our social media platforms and general communication platforms and general modernization and accessibility features to everything we do.
While these are our top priorities from now through our annual conference, this does not mean we will lose focus on other areas of importance. We will still be working on our strategic plan with the pillars of Advocacy, Education, Community and Innovation. The staff and I take the job very seriously that we are the voice to, of and for those on nutrition support. To aid in this, the board has established a Clinical Advisory Committee to steer the direction of advocacy and education efforts.
We began 2023 by celebrating Oley’s 40th anniversary. We begin 2024 by asking where we will be 40 years from now.
During our strategic planning session, I asked the board where they saw the challenges facing our community. Most were in the category of national advocacy. Some of the broader themes were shortages, minimal standard for nutrition support care, disparities, barriers to access, insurance challenges, the need for more innovation, and distance to knowledgeable teams. As staff, we daily hear the plights of the patients and families we serve. You are not alone.
There are mountains of issues facing our community. We need you. I’m reminded of the African proverb, “If you want to go fast, go alone. If you want to go far, go together.” If I were to share my personal vision for Oley, it’s this quote.
We are better together. In a year from now, I hope to be celebrating all the amazing wins for our nutrition support community. Won’t you join me in writing that story? How do YOU want to contribute this year to Oley?
Financial Donations
• Annual end-of-year donations or towards the annual conference travel scholarships can be made at oley.org/ donations.
• Refer us to a company that might be coming a partner or exhibiting at our conference.
• Learn how to become a Horizon Society member.
• Check with your employer about gift matching.
Volunteer
• Stay tuned for volunteer opportunities.
Thank you for being a valued member of our community.
