Staff Updates

Roslyn Dahl

Roslyn Dahl

Long-time employee Roslyn Dahl, Oley’s Director of Communications and Development, left the foundation in October 2022. During her twenty-seven years with Oley, Roz served in various roles and touched many lives. She was always willing to go above and beyond to fill in the gaps, and to serve Oley members. Her relationships with and dedication to our corporate partners was a key part in keeping Oley financially sound. She also built strong friendships with Oley members over the decades, and found joy and inspiration in her many interactions with members. "I am so grateful to have worked in this community," said Roz. "I have learned so much. It has shaped who I have become." Roz's dedication and passion made her a great colleague, friend and resource. The Oley community thanks her for her years of service. We miss her and wish her well in her next adventure.

Maisy Cyr

Maisy Cyr

Maisy Cyr joined the Oley staff in December as Manager of Education and Innovation. Maisy and her family have been involved with Oley since Maisy was young. As a home nutrition support consumer herself, she is passionate about making sure patients and families have a voice in the IV nutrition and tube feeding community. She has a master’s degree in social work and has built a career around sharing information and resources.

As Manager of Education and Innovation, Maisy’s role is to bring relevant and up-to-date information directly to home nutrition support consumers in the form of webinars, regional and mini meetings, and the annual conference, as well as resources shared on the Oley website. In this role, she also hopes to create space for progressive conversations between consumers, corporate partners and clinicians and shine a light on the innovation and ingenuity our patients and families show every day as they navigate living with enteral and/or parenteral nutrition.

Andrea Taylor

Andrea Taylor

Andrea Taylor, RD, CNSC, joined the Oley staff in November. Andrea brings her clinical experience and passion to the position of Manager of Clinical and Corporate Engagement. Andrea has been a dietitian for over seventeen years, with over fifteen of those years as a certified nutrition support clinician (CNSC). Andrea received her bachelor’s degree from the University of Akron in Akron, Ohio, and built her nutrition support foundation working at the University of Maryland Medical Center in Baltimore, Maryland. After relocating to Rochester, New York, in June 2013 for her husband’s job, she followed her interest in nutrition support by joining Coram as a home nutrition support dietitian.

Andrea's primary focus was on home-start parenteral, or IV, nutrition (PN) and long-term PN management. She loved the relationships she built with patients, their family members, other clinicians and providers. Through these relationships, she became intimately aware of the challenges these patients face, as well as the need for further support and advocacy. Her passion for helping people led her to the Oley Foundation, where she is eager to collaborate with industry leaders and other clinicians to improve the quality of life of home tube feeding and PN consumers.

Nutrition Support that puts the patient first

Gillian was diagnosed with gastrointestinal motility disorder and gastroparesis leading to long-term, severe malnutrition. Starting on parenteral nutrition was her turning point.

On Your Behalf

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 Life- lineLetter 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. The article that begins on page 1 is adapted from this paper.

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!

Joan Bishop, Executive Director Emeritus●