- Meet Consumers/Patients
|San Francisco Meeting and Marathon|
The Oley Foundation will be coordinating several one-day regional conferences for 2014–2015, with support from NPS Pharma. We were inspired to hold the first conference in San Francisco in July when Oley member Emma Tillman, PharmD, PhD and home parenteral nutrition (HPN) consumer, notified us she was signed up to run the San Francisco Marathon. That’s 26.2 hilly miles, and Emma was determined to—and did—run it, along with several others comprising “The Oley Running Team” and about 20,000 strangers (running the full or a half-marathon).
At the regional conference the day before the marathon, Emma shared her story, and her own inspirations, with everyone who gathered for the event. Other highlights of the conference (detailed below) include presentations by Russell Merritt, MD, PhD, and Gail Egan, MS, ANP, and a series of roundtable discussions.
Emma is an assistant professor in the Department of Clinical Pharmacy at the University of Tennessee Health Science Center and a clinical pharmacist in the area of pediatric nutrition and metabolic support at Le Bonheur Children’s Hospital. She has a strong interest in PN-associated liver disease (PNALD). She is a runner, who, with a friend, set a goal of running a marathon in every state.
She ticked off a few states, then, in 2011, she had a major pulmonary embolism. Growing up she had experienced cyclic vomiting, and in recovering from the embolism she developed gastroparesis. For a while, Emma stopped running. Then, she says, in 2014 she met Stanley Dudrick, MD, FACS, FACN, FASPEN, at the annual meeting of the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.), and he encouraged her to find a way meet her goals. Emma did just that, and finished the marathon successfully, with some oversight and support from her homecare company. What’s more, with this marathon, Emma raised over $6,000 to benefit Oley! Teammates Jessie Baker, Lisa Metzger, and Gail Egan also ran and raised funds for Oley.
Other Conference Highlights
Dr. Russell Merritt gave a lively and information-packed presentation on managing intestinal failure. He primarily discussed diet and medication, emphasizing that it may be necessary to try a range of things before you find what works for an individual patient. Gail Egan followed with a popular presentation on vascular access, addressing questions such as, “What do I do when my device doesn’t work?” The morning ended with another presentation by Dr. Merritt, in which he discussed future cures for short bowel syndrome and shared a videotaped interview with his colleague, Tracy Grikscheit, MD, who is involved in research on regenerative medicine and tissue engineering.
After a break for lunch, participants broke into small groups to discuss absorption (led by Deb Pfister, MS, RD, CNSC); tube feeding (Cara Larimer, RD); HPN solutions (Marc Stranz, PharmD); pediatric issues (Russell Merritt, MD, PhD); intestinal failure centers (Deborah Andersen, RN, BSN, CCTC); and catheter complications (Reid Nishikawa, PharmD, BCNSP, FCSHP).
Future Conferences, Future Runs
Watch the Oley Web site and your email for invitations to upcoming regional conferences. You can also call the office (518-262-5079 or 800-776-OLEY) for details.
Every now and then members call us with an interest in running a race. Please let us know if you have a race in your future plans! We'd love to share your stories, too. If you'd like to run a race but feel you need support with training, Achilles International is a great resource (www.achillesinternational.org or 212-354-0300). Their mission is to enable people with all types of disabilities to participate in mainstream athletics. Let them help you meet any of your running goals (from short races to marathons)!
LifelineLetter, November/December 2014