On Your Behalf

On Your Behalf

Joan Bishop, Executive Director Emeritus

We ended last year and began 2023 with confidence, energy and enthusiasm. I am thrilled! With Beth Gore in the leadership position and a strong strategic plan in place, we will continue to be dedicated to your needs. We know you will appreciate the positive vibe that flows through the Oley Foundation as we launch new initiatives and modernize efforts. You will witness staff with revised titles and responsibilities and get acquainted with new additions to the Oley team. I know you will enjoy their contributions as we move through this year, especially as we celebrate the first forty years of Oley!

We Grow:

Oley welcomed 1,741 new members in 2022, bringing our total year-end membership to 27,395 worldwide.

We Appreciate:

Strong financial support from industry and individuals last year provided the backbone for what we do. These commitments showcase your appreciation and fuel our motivation to remain the trusted resource for members. Thank you!

We Educate:

• The annual conference was held virtually in August, with 429 in attendance and, as of early January, 2,981 views of the recordings. See oley.org/2022Conference Presentations.

• Jammin’ Jammies—traditionally held in person at our annual conference— was held virtually and featured games and goody bags.

• A mini meeting was held virtually in April, with 192 in attendance and 552 views of the recordings, available at oley. org/oleyminimeetings.

• Four webinars were held throughout the year, with an average attendance of 119 and, as of early January, a total of 575 views of the recordings, available at oley. org/webinars.

• Oley organized a symposium, Perspectives on HPN Through Past Decades and into the Future, at the annual meeting of the American Society for Parenteral and Enteral Nutrition (ASPEN), with approximately 300 attendees.

• We published five issues of the LifelineLetter in 2022. Moving forward we will shift from print to a digital format. This change will allow readers to enjoy a more user-friendly format, where they can flip from one page to the next easily and which will contain live links. This change will help us preserve resources (printing and postage costs) and pass along information in a more timely manner. To request a paper copy, contact Cathy at (518) 262-5079.

We Respond:

We continue to respond to hundreds of “requests,” helping members overcome medical issues, solve quality of life challenges, and more. It is a win-win when we can connect people with others to help them navigate issues such as not being able to eat or preparing yourself and/or your child to enter school or transition to college life. We remain grateful for those who are willing to share their knowledge and experiences to help others. A secondary benefit is that friendships form.

We Serve:

Staff continues to serve on the advisory board of LIFT-ECHO (Learn Intestinal Failure TeleECHO) launched by Dr. Kishore Iyer. LIFT-ECHO is an “online community of medical professionals dedicated to supporting the treatment and management of intestinal failure patients” (liftecho.org). Professionals learn from one another by discussing issues specifically related to intestinal failure and management of HPEN. A list of didactic lectures can be found at liftecho.org/web/resources/ didactics-archive. If your physician is challenged by your issues and concerns, they might want to tap into this resource.

We Collaborate:

• Oley staff and members participated in the spring and fall Public Policy Forums organized by the Digestive Disease National Coalition (DDNC). The spring forum included visiting with congressional staff virtually.

• An Oley staff member serves on the executive committee of the DDNC board and on the board of the National Board of Nutrition Support Certification, an independent certification board founded by the ASPEN to help improve care for home nutrition support consumers.

.• Oley staff and members participated in the Patient and Providers for Medical Nutrition Coalition’s day of action, reaching out to their representatives and showing support for the Medical Nutrition Equity Act.

We Promote:

We helped to coordinate an FDA Patient Listening Session to promote a better understanding of short bowel syndrome. At this session, patients and caregivers shared what it is like to live with short bowel syndrome and home IV nutrition and addressed questions from the FDA. Over sixty FDA representatives attended this virtual event. More at oley.org/FDA_Listening.

We Contribute:

We contributed to a paper in the Journal of Parenteral and Enteral Nutrition, written by experienced nutrition support professionals who often present at Oley events.

We Network:

Recognizing the importance of peer-to-peer support, we help provide meaningful connections, information, and support to Oley members. Oley and Oley Ambassadors have been facilitating virtual support group meetings. There are groups for adults, caregivers, and parents; one for young adults; and one for children (Kidz Klub). The groups tend to be small, and there is time for everyone to ask questions and participate.

Kidz Klub met virtually three times, with five to te n children attending each session—the perfect size for anything from science experiments to scavenger hunts.

We Expand and Enhance:

The heart and soul of Oley, the Ambassador program enjoyed growth, both in number and in knowledge. At the end of 2022, we had sixty Ambassadors in twenty-five states and nine countries. Several virtual training and social sessions for the Ambassadors were coordinated, a new handbook was developed, and we welcomed several new Ambassadors. Learn more at oley.org/ambassadorsmain.

We Look Forward:

• To launching our Find a Healthcare Professional directory. This tool is designed to help patients, families and clinicians locate professionals involved in home IV nutrition and tube feeding and related fields. We know Oley members will benefit from this service.

• To delivering the updated Enteral Donation Program (formerly known as the Equipment Exchange Program). Oley staff and volunteers handled an estimated average of thirty-five calls per week about the EE, with people calling to donate or request items. On top of this, approximately 600 items were listed for donation through our online forms, and over 679 were requested.

• To meeting your expectations. Please let us know what is important to you. Contact us at oleyfoundation@gmail.com, oley. org/contactus, or (518) 262-5079.

• To seeing you in St. Louis!