Kelly Tappenden, PhD, RD, Dean of the College of Health at University of Utah Health and President of the Oley Foundation Board of Directors, was recently interviewed for the Women in Leadership series by University of Utah Health.

Dr. Tappenden says, "I was drawn to the science of metabolism, and it was inspiring to put it into action in the field of nutrition....I’ve been fortunate to help develop diets that patients can better absorb and contributed to the only drug for short bowel syndrome on the market. Read more.

Minds Matter: Discussing Unique Mental Health Challenges in the Nutrition Support Community

May 24, 2024, 6:00 p.m. ET

We know the relationship between mental and physical health is complicated, and resources can be difficult to access. This evening will be an opportunity to ask questions, share stories, and hear from some professionals in the field.

Please submit questions and topics for discussion when registering to help prepare facilitators.
Please note: This will be a discussion about difficult topics related to mental health. Due to the subject matter, it is highly recommended that participants under the age of 18 attend with a parent/guardian.

Contact the Oley Foundation at info@oley.org for more information.

Register here.

Join the Oley Foundation for Its Latest Webinar

by Andrea Taylor, RD, CNSC, Oey Foundation Manager of National Advocacy

Beth Gore, Alaina McCormick and I attended the American Society for Parenteral & Enteral Nutrition) (ASPEN) Nutrition Science & Practice Conference in early March in Tampa, Florida, on behalf of the Oley Foundation.

For the third year in a row, Oley presented the opening symposium, generously funded by an education grant from one of our corporate partners, Takeda. This year’s presentation was entitled “Significance Beyond Statistics: Redefining the P-Value.” The p-value is often referenced in research as a marker of whether results are significant (as Dr. Mercer notes in his article in the spring issue of the LifelineLetter). But who gets to decide what is significant to a patient? We wanted to get clinicians to rethink the p-value, where “p” stands for patient. We intentionally chose speakers with real-life experience and over half of the speakers were patients or caregivers. Based on the feedback we received, and the number of tissues used, the presentation was a success.

Since it was near Beth’s hometown, her husband and five of her six children were able to attend. Her youngest daughter, Zoe, gave an impactful presentation during the symposium on the sibling perspective. Her youngest son, Manny, who lives on home parenteral (IV) support, was also in attendance. His favorite part was wheeling through the exhibit hall meeting attendees.

While we were there, we also had the honor of witnessing long-time Oley member Michael Medwar being awarded the Lyn Howard Nutrition Support Consumer Advocate Award. Michael’s personal experience on home parenteral nutrition, as well as his professional experience supporting and empowering home enteral and parenteral patients, made him the perfect candidate for the award, which was named in honor of Oley cofounder Dr. Lyn Howard.

Next year, ASPEN will be held in Columbus, Ohio, March 22–25. We’re already planning how we can top this year!

A recording of the presentations from “Significance Beyond Statistics: Redefining the P-Value” will be available soon for viewing on the Oley YouTube channel.

               Kay and Clarence served as Oley Foundation Regional Coordinators (now our Ambassador program) for many years. They held their first support group get-together in the Syracuse, New York, area in 1989. Their objectives were “to relieve the feeling of isolation for PEN people; to exchange ideas and experiences; to answer questions about living on a PEN program; to make new friends who understand the PEN lifestyle.” These remain core to Oley’s goals today.

               Learning of Kay’s passing, Dr. Howard notes, “This feels like the end of an era with both Oley and Kay gone. I have terrific memories of how the Oldenburg family got us started, and frequently made the long drive from Syracuse to Albany to cheer us on. The Oley Foundation has steadily grown to over 20,000 participants so the Oldenburg family has made an enormous contribution and we will always be incredibly grateful for the Oldenburg startup funds from [Clarence’s brother] Bill.”

               Joan Bishop, Oley Executive Director, writes, “Kay and Clarence always represented the ‘voice’ of the consumer dependent upon home nutrition support with class and dignity and will be remembered as such. We will always do our best to keep the Oldenburg family’s wishes moving forward.”

Celebrating Oley’s Roots

               Clarence, born in 1929, led a normal and healthy life until 1975, when a blood clot cut off circulation to his intestines. Over the course of several emergency surgeries, most of Clarence’s small intestine was removed. He spent the next five years in the hospital, “in a demoralized state of starvation” (LifelineLetter, Jan/Feb 1998).

               In 1980, Clarence met a nutrition support specialist and started parenteral nutrition (PN). He was able to go home on the therapy and leave the hospital for good. He was one of Dr. Howard’s patients at Albany Medical Center, Albany, New York, in the early 1980s. Clarence’s brother, Bill, convinced of the great value in bringing home nutrition support consumers—and their families—together, provided the funding to start the Oley Foundation.

               Meanwhile, in nearby Sharon, Massachusetts, Lee and Marshall Koonin had started the Lifeline Foundation, a support group for people on homePN, in 1978. Lee had begun homePN in 1977, and Marshall was committed to finding others on homePN, both to reduce the isolation Lee and others felt, and to help others learn about the therapy.

               They published a newsletter, organized picnics, and established a network of patients who were willing to talk to others. By 1984, membership had grown to about six hundred and it had become a huge commitment for the Koonins, both in terms of time and money. When they were confident that the Oley Foundation would continue the work they had begun, they turned the Lifeline Foundation over to the Oley Foundation.

               What began with Kay and Clarence and Lee and Marshall in the 1980s has, as Dr. Howard notes, grown to a community of over 20,000. This community and all of the information and support shared, are a beautiful legacy that we will continue to celebrate and for which we will always be grateful.

LifelineLetter, May/June 2019  

Hoover teen James DeLano was named The Oley Foundation Child of the Year on June 22 at their national conference in Chicago. He was also recognized for being nominated for their Innovator/Advocator Award and their Celebration of Life Award.

The Oley Foundation is a national nonprofit organization that strives to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy and networking. Their Child of the Year is chosen from nominations from around the country based on criteria based on their positive attitude in dealing with illness and therapy.

DeLano was nominated by his specialty infusion pharmacy, ThriveRX.

Thrive RX’s nomination said DeLano has overcome many obstacles in living with mitochondrial disease, hemophagocytic lymphohistiocystosis (HLH) and severe eosinophilic esophagitis (EoE). Throughout his journey, he’s remained positive and shares his experiences to help others. He has maintained his thirst for knowledge and desire to be a vital part of his family and his community through volunteer work.

Click here to read more on Jame's story.

REGISTER HERE!

Complications of Home Parenteral Nutrition: What to Do & How to Minimize

October 18, 2018 | 1:00 - 2:00 pm ET

Darlene Kelly, MD, PhD	Ann Michalek, MD

Generously sponsored by:

Oley would like to acknowledge and thank Guiller B., too, who has been helping people who speak Spanish when they call us through our Equipment-Supply Exchange program. We would be lost without her help!

¿Habla A Español?

Si usted es un paciente de habla español y depende en nutrición parenteral (HPN) o nutrición enteral (HEN) o tiene cuidado de tal paciente, la Fundación Oley puede ayudar. Phil Kellerman, Asociado de Programa habla a español. Puede ponerse en contacto con Phil los lunes–miércoles de 9:00 a.m.–2 p.m. por teléfono, numero 518-262-5079. Correo electrónico: philkellerman.oley@gmail.com.

También nos gustaría reconocer y darle gracias a Guiller B. quién ha estado ayudando a la gente que habla español cuando nos llaman a través de nuestro Programa de Intercambio de Suministro de Equipos. ¡Estaríamos perdidos sin su ayuda!

August 18, 2016, Silver Spring, MD — The former president of the American Society for Parenteral and Enteral Nutrition (ASPEN), Daniel Teitelbaum, MD, FASPEN, lost his battle with glioblastoma today. Dr. Teitelbaum was an influential figure in the field of clinical nutrition and a revered member of ASPEN. He possessed an international reputation for his interest and work in the surgical care of infants and children with Hirschsprung disease, colorectal anomalies, short bowel syndrome and intestinal failure. more...

Bette has started a petition which, as of early March, had over 69,750 signatures on it in support of the Medicare Home Infusion Site of Care Act of 2015 (S. 275 / H.R. 605), bills which the Oley Foundation and A.S.P.E.N. are fully in favor of. 

LifelineLetter, January/February 2016

		Maurice Shils, MD

The Oley Foundation acknowledges the major contribution Maurice Shils, MD, made to the field of nutrition support. Dr. Shils, who passed away in June 2015, was a pioneer in clinical nutrition who helped develop enteral formulas for cancer patients in the sixties, and in 1969 discharged one of the first patients home on parenteral nutrition.

Dr. Shils was involved in defining the optimum parenteral adult and pediatric vitamin and mineral formulations, and edited the widely used text Modern Nutrition in Health and Disease. During his lengthy career, he trained many nutrition professionals and played an influencial role in the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). He will be remembered as a gentleman, a scholar, and above all, as one of the great leaders whose many contributions to nutrition support resulted in the life-saving nourishment Oley consumers depend upon.

LifelineLetter, January/February 2016

Linda Gravenstein

The keynote address, “The Cost of Safety” presented by Dr. Debra Simmons and Dr. Meredith Kilgore, was a compelling discussion of the costs and value measurement of and where cost and value intersect—of clinical safety improvements. At smaller sessions and roundtables, we learned more about blenderized diets, transitioning to adult care, skin care, and more. The Oley booth was busy with clinicians looking to find the latest news.

Lyn Howard Advocacy Award

At CNW, Oley member Linda Gravenstein was given A.S.P.E.N.’s Lyn Howard Nutrition Support Consumer Advocacy Award. For many years, Linda has advocated for her daughter, who has been on parenteral nutrition over twenty years, and in so doing, she has paved the way for other parents with kids on home nutrition support. Linda is also on the TSA’s Coalition for Travelers with Disabilities, and has been involved with efforts to raise awareness about the Medicare Home Infusion Site of Care Act.

In receiving the award, Linda said, “I would like to thank Dr. Lyn Howard and the Oley Foundation for giving us and so many a purposeful life. I would also like to thank my daughter Megan for being my light and her fierce independence that allows me to share with others what we have learned in our journey.”

LifelineLetter, March/April 2016
Updated 8/16/16

New International Alliance of HPEN Consumer Groups

LifelineLetter, November/December 2015

Joan Bishop, Oley Foundation Executive Director, and Darlene Kelly, Oley’s Science and Medicine Advisor, attended a meeting of the European Society for Clinical Nutrition and Metabolism (ESPEN) in Lisbon, Portugal, this fall, where they and representatives from other nutrition support consumer groups hosted an exhibit for PACIFHAN, the newly organized Alliance of Patient Organisations for Chronic Intestinal Failure and Home Artificial Nutrition (pacifhan.org). This exciting new alliance will facilitate the international sharing of information and resources to improve the quality of life of home artificial nutrition (HAN, the equivalent of our term “HPEN”) consumers.

PACIFHAN had its beginnings in September 2014, when representatives from five organizations (including the Oley Foundation) first met formally in Geneva, Switzerland, also in conjunction with an ESPEN meeting. Currently, the alliance includes the Oley Foundation (representing the U.S.) and groups from Australia/New Zealand (PNDU), the Czech Republic (Život bez streva), Italy (Un Filo per la Vita), Poland (Stowarzyszenie Apetyt na Zycie), Sweden (Svenska HPN-Föreningen), and the United Kingdom (PINNT). In the future, it is hoped that other HAN patient organizations will join PACIFHAN, and that members will share ideas on how PACIFHAN can help HPEN consumers and suggest areas that the alliance can investigate or develop with a patient focus. Please share any of your ideas with Joan at bishopj@mail.amc.edu or (518) 262-5079.

PACIFHAN’s Goals:

1. To be a trusted international reference on home artificial nutrition (HAN) from the patient’s perspective;
2. To encourage the exchange of internationally peer reviewed published medical-scientific information related to HAN;
3. To assist HAN patients who wish to travel/stay abroad to seek guidance through the member association in the destination country affiliated with the international organization;
4. To organize an annual general meeting that will be attended by a representative of each member association;
5. To increase awareness of HAN;
6. To improve the quality of life of HAN patients.

Andy Newman

Great Neck Record, 09/11/15 

Thrilled and energized by receiving an award this summer in her very specialized field of medicine, Great Neck Estates Dr. Lillian Harvey-Banchik took a vacation with her husband, Mark, to Iceland to enjoy a well-earned break from the rigors of her job.

Click here to read the full article in the Great Neck Record, 9/11/2015

September 12, 1949 - August 21, 2015

It is with overwhelming sadness that we share the news of Davria (Davi) Cohen’s death on August 21, 2015. Davi was an Oley Ambassador (formerly Regional Coordinator) since 2003 and was a huge personality in a small frame. Davi will be remembered in the Oley community as an extremely generous woman with a great spirit, who sincerely cared about everyone she met. She and her constant companion and loving husband, Steve (also an Oley Ambassador), were always eager to help others and did so with a smile and a joke. They distributed Oley information at Oley exhibit booths, shared their perspective on "living” as a HPN consumer and caregiver whenever called upon, visited and offered support to everyone in need.  Their presence enhanced every Oley Ambassador workshop they attended! Recipients of their efforts were left forever grateful. The beauty of knowing Davi was that she was warm and compassionate and often tackled the task of comforting others while wrestling with her own challenges. She never expected anything in return.  Knowing that she made a difference was enough for her.  It was a pleasure to know and work with Davi.  We were lucky to have been the recipient of her kindness. We send the most heartfelt condolences to Steve and his family. RIP Davi Cohen. You are missed!  

The $1,000 camp scholarship sponsored by Fresenius Kabi USA was created to provide youth on home parenteral and/or enteral nutrition (HPEN) the chance to experience summer camp, building self-confidence, independence, courage, and creativity in a safe environment.

Camp Scholarship Criteria:·       

Home parenteral and/or enteral (HPEN) consumer aged 7–18·       

Applicant must qualify for a camp that provides appropriate medical support for an HPEN consumer·       

Consumers who have not been able to attend camp in the past will be given first consideration

Note: Up to five scholarships will be awarded each year, as long as funding is available. The scholarship will be offered as a reimbursement to help cover travel expenses (i.e., airfare/mileage, lodging, and food) AFTER travel has been completed and receipts for travel expenses submitted. Camper will be required to submit a photo or short statement that reflects their camp experience, with permission for Oley to use the photo or statement in Oley publications and promotional materials. 

Oley Tim Weaver Camp Scholarship Applicant must provide the following material:

1. Cover letter with name, address, daytime phone, email, age, diagnosis, HPN and/or HEN, years on therapy.

2. An original essay, video or song describing why attending summer camp would be a meaningful experience for them and how it would make a difference in their life

3. A letter of recommendation from a teacher, family member, or community member detailing how the youth will benefit from the summer camp opportunity.  

4. A letter from a clinician or homecare company reflecting the youth’s need for home parenteral or enteral therapy.

Send application materials to:

Fax (518) 262-5528 

QUESTIONS?

CALL (508)262-5079 / (800)776-OLEY

FAQ:

What does the scholarship cover?

The scholarship will cover travel expenses (i.e., food, lodging, and mileage/transportation) incurred up to $1,000.

When is the scholarship issued?

Scholarship will be offered as a reimbursement. Receipts should be submitted after travel has been completed. 

How are the scholarships awarded?

Five scholarships are awarded by committee reviews of the applicant’s essay/video/song and supporting documentation.

Is there a list of camps available?               

The Oley Foundation has a list of summer camps that offer programs for children on HPEN. However, you can check out the link seriousfunnetwork.org for a more complete list of camps for children with serious illnesses.

If the scholarship is granted but my child has a medical emergency and cannot attend camp, can they use the scholarship the following year?

No. They would be encouraged to reapply the following year.

Does the scholarship cover family retreat weekends or only summer camp?                

The scholarship can be applied to summer camp only.

Is there a specific time during the summer that my child has to attend camp?                

No.  Many camps have different weeks assigned for specific medical conditions during the summer. Please review the camp schedules located on the camp websites to determine the medical conditions and dates they are able to accommodate.

What kind of medical care do the campers receive?                

Many of the camps provide 24-hour medical supervision by paid and volunteers physicians however it is best to check the camps website for a more detailed description of care.

What activities are offered at camp?                

Each camp will have a variety of activities which may include but not limited to: fishing, boating, camping, swimming, arts and crafts, performing arts, group games, dancing and singing.

updated 3/15/15  

Click here to read the full article

TPN Patients Live on IV Nutrients -- No Food (5/24/15)

Click here to read the full article

Infant Growth, Development Critically Impaired Without Proper Nutrition (5/23/15) 

Click here to read the full article

updated: 5/26/15

The following memorials were written by Meshal Samadzada, Oley Administrative Support Specialist.        

Don Freeman   

  Don Freeman, a long-time Oley member and former board member and Oley Ambassador, passed away on February 18, 2015. Don would have been 73 on May 21. After being diagnosed with Crohn’s disease when he was fifteen years old, Don underwent numerous surgeries and resections. Ultimately, he was placed on parenteral nutrition (PN). In 1982, he was one of the first patients in Canada—and the first in Ottawa—to be sent home on PN.  

 Don had a long history with the Oley Foundation. He came to the first annual conference, thirty years ago, in Saratoga Springs, New York. Don served on the Board of Trustees, as an Oley Ambassador, and on conference and LifelineLetter Advisory committees, and contributed photographs, helpful tips, and articles to the LifelineLetter. In 2002, Don was awarded Oley’s LifelineLetter Award. Don was also instrumental in establishing Oley’s Horizon Society, which helps ensure Oley’s financial future and now has 68 members. 

      A lifelong adventurer, Don traveled extensively in Canada, the United States, and Europe. He loved sports, included skiing, curling, and golf. Don also volunteered as a coach, scout leader, and curling manager, and on ski patrol. His family writes, "Don never let his medical needs get in the way of a fulfilling life. He travelled and skied across North America and Europe, creating wonderful memories with his son.” 

Judi Erwin            

      Judi Erwin, an Oley Ambassador, passed away on December 18, 2014. Judi first learned of the Oley Foundation a few years ago, following a radical emergency surgery in 2009 that left her dependent on HPN. She and her husband, James, had only recently become Oley Ambassadors. Judi said she felt "it was a small way of showing appreciation for the wealth of information” she had learned through Oley. Judi was always eager to lend a helping hand to fellow HPN consumers seeking support.            

Don and Judi will both be greatly missed. Their commitment to Oley and its members was invaluable.