Know Your Regional Coordinators

Sonia Alagna (TR, Parent, Volvulus) - Lansing, MI: Sonia is a mother of two. Her daughter Jessica, born in 1998, was diagnosed with volvulus and ultimately left with short bowel syndrome. Jessica successfully underwent a small bowel transplant at age 5 (in Omaha, NE) and is currently doing wonderfully. Sonia is enthusiastic and delighted to speak to others about the experience.

Nikki Albrecht (HPEN, Motility, Reflux) Chicago, Illinois: With a primary diagnosis of vagus nerve paralysis/gastroparesis, Nikki is on enteral nutrition. Secondary diagnoses include Celiac Disease and multiple allergies. She has a separate G- and J-tube. A special education teacher, Nikki has extensive experience providing support and would like to become an outlet for younger consumers, utilizing both her professional and personal experiences. Says Nikki, “I have gotten a lot of support and guidance from the Oley foundation and it’s members. After attending my first conference in Chicago, I knew I wanted to be a bigger part of this organization and share the help that has been shared with me.”
Nikki’s condition has presented various challenges throughout her life but she has a positive message to share with others, “You are not alone.” She hopes to build an active support network in the Chicago area, focusing on young adults!

Norman Benway (HEN) - Toldeo, OH: Symptoms of what would later be diagnosed as an esophageal motility disorder first began for Norman in late 2004. By 2006, Norman was hospitalized, weighed only 93 pounds, and new to the world of tube-feeding. He underwent many tests, studies, and therapies, but ultimately returned home unable to eat or drink, relying entirely on his PEG tube for nutrition. With the help of a trusted dietitian, Norman has been able to adapt to his new lifestyle. He’s gaining his weight back and is currently working two jobs! Norman is determined to help himself and other people dependent on nutrition support. He is extremely motivated and plans to establish a support group in his area.
 
June Bodden* (HPN, SBS, Crohn’s) - Clearwater, FL: June is in her “sensational 60’s” with Crohn's disease since age 15, an ileostomy since age 21, and HPN since 1984, at age 39. A Regional Coordinator and an active support group leader, June has attended many Oley conferences and co-led the annual gathering in Florida in 2001. A strong faith, volunteer work and help from family and friends give her a positive attitude.
 
BetteMarie Bond (HPN, Motility) – Levittown, PA: With a diagnosis smooth muscle disorder, Bettemarie has been an Oley RC since 1992. Bette has gained her independence while on HPN. She has experience with going to college, job interviews, working full time as an occupational therapist, and purchasing her own home, all while connected to a PCA. Her positive perspective, kindness, generosity, and “can do” attitude set a terrific example of what can be achieved while on therapy.

Betty Bond(HPN, Parent, Motility) – Levittown, PA: Betty is the mother of Regional Coordinator Bette Marie. Betty offers support, as well as her experience as a parent of a child who grew up on HPN and as a nurse. She has volunteered for Oley at the Double H Hole in the Woods camp as a HPN nurse.
 
Bruce and On Braly (HPN, Parent, SBS) - Davis, CA: The Braly's son, Matthew, born in 1988, has short bowel and is on HPN. Feeling they had gotten much support through Oley over the years, they decided they wanted to give some back!
 
Beverly Buchanan(OFF, SBS, Crohn’s) - Lakewood, CO: Diagnosed with Crohn's disease, Beverly Buchanan started HPN in 1982 due to short bowel syndrome, but is currently off nutrition support. She says that the LifelineLettcr has been a great help on her journey with homePEN and would like to share her expertise with fellow consumers. In addition to her experience with HPN, Beverly has a background in nursing and many years of experience with public service and public speaking. She is married and has three children.
 
LeeAnne Bye (HPEN, Parent, Motility) – Northfield, NJ: LeeAnne is an RN and mother to four childeren, including her daughter Samantha, who has been on both enteral and parenteral therapies due to chronic pseudo-obstruction. LeeAnne and her family are familiar faces at Oley Conferences. She feels her experiences as a parent and advocate will benefit others struggling with similar issues. She would really like to start a local support group. Contact LeeAnne at (604) 641-9087 or allenleeannebye@aol.com if you are interested in joining.
 
Michelle Christensen (TR, Parent, Motility) – Seven Fields, PA: Michelle is mother to daughters Maddie and Isabelle. Isabelle was born with multiple challenges, including a mitochondrial complex disorder and motility issue, that eventually necessitated a small bowel/liver transplant, which she received in Pittsburg in 2004. Michelle is a founding member of the Mighty Medical Miracles pediatric support group in Columbus, Ohio, and is now happy to spread the word about Oley in their new home near Pittsburgh. Michelle can speak to parenteral and enteral therapies and the transplant journey.
 
Davi and Steve Cohen (HPN, Trauma, SBS, Spouse) - Crofton, MD: Davi has been on TPN for 25 years due to intestinal trauma from a car accident. She feels she could offer others the same support she received repeatedly over the years through the Oley Foundation. Husband Steve is very supportive, and has spoken at clinical meetings on Oley’s behalf. Together they have raised their children, traveled extensively, and continue with other hobbies and adventures they enjoy. We are thrilled to have them give their great insight and energy to Oley members!
 
Jim Cowan* (HPN, SBS, Crohn’s) - Cleveland Heights, OH: Jim is divorced, on disability and has been on HPN since 1977. He has experience with multiple types of catheters. He has conducted support groups for the local CCFA chapter and co-chaired annual Oley conferences. He is a former Oley board member and valued advisor.
 
Diane Cumberledge (HPN, SBS) - St. Albans, WV: Diane has short bowel syndrome and has been on and off HPN since 1984. She has had experience with many of the various pumps and catheters. She also spent some time off therapy trying to maintain herself orally and offers to share her experience with others. She has a background in accounting.
 
Shannon Curran (HEN) – Ontario, Canada: Shannon began using her first j-tube at the age of 16. Now age 27, she still uses a j-tube but is currently waiting for a MIC-KEY. Shannon is hoping to enhance OLEY’s presence in Canada through a variety of seminars and meetings. She is available to talk and offer her insights to new users as well.
 
Anna Cyr (HPEN, Parent) - Sabattus, ME: Anna lives with her husband, Mike and two daughters, Mallory (aged 23) and Maisy (aged 15). Mallory and Maisy were both born with Microvillous Inclusion Disease and have been on TPN almost since birth. Anna has had experience with Hickman catheters, many different types of pumps, and g-tubes. Anna also has experience in child development and was a Parent Educator for several years. Presently, Anna is a Family Consultant with the Integrated Services Project in Maine and works with families of children with special health needs. She understands what families go through in trying to provide their children with typical childhood experiences while dealing with IV infusions, G-tube feeds, hospitalizations, etc. and would be happy to answer questions or just talk. Anna was fortunate enough to be able to attend the 2008 Oley conference and was inspired to become an RC as a result.

Sheila DeKold (HPEN, Parent, Motility) - Floyds Knobs, IN: Sheila is mother to David and Olivia, who has pseudo-obstruction and uses both HPN and enteral therapy. Sheila wanted to be available to others in her area, and hopes to offer an understanding ear to those in similar situations. She also believes there is strength in numbers, and welcomes the chance to connect to other families and individuals.
 
Cherie Dickerson (HEN, Swallow) - Richmond VA: Cherie brings support for the enteral consumer to her area and beyond. With a diagnosis of esophageal dysmotility she easily relates to the frustrations of others with similar issues and the pain associated with them.

Darla Edwards (HPEN, Congenital Intestinal Lymphangiectasia) - When she was just two years old, Darla was diagnosed with Congenital Intestinal Lymphangiectasia.Since then she has received additional diagnosis of Secondary Protein Losing Enteropathy, Secondary Hypo-Gamma Globulinemia, Asthma, and Spinal Osteopenia. She was TPN-dependent for eight years and also received enteral nutrition through a G-tube. She has experienced beginning stage liver failure, pitting edema, and suffers from compromised immunity. Though currently off TPN, Darla still receives IVIG and protein infusions. Now in her early 20s, Darla is a full-time college student majoring in Child Psychology. She is employed as a part-time child daycare provider and spends her free time drawing, singing, dancing, and doing jigsaw puzzles. She knows about the importance of achieving her goals in spite of the challenges put forth by her disease. Darla hopes that sharing her medical experiences and personal knowledge will help Oley members. She is very interested in developing local fundraisers and searching for new outreach avenues.
 
Don Freeman (HPN, SBS, Crohn’s) - Ontario, Canada: Don was diagnosed with Crohn's disease at age 15 and has been on HPN for 20+ years. He travels extensively in Canada, the US and Europe. He is retired from his job as personnel administrator for the Canadian government, but can speak about his many year’s experience working and being a parent while on therapy. He actively participates in many sports including skiing, curling and golf. Presently he is working hard to reestablish the Canadian Parenteral and Enteral Nutrition Association (CPENA).
 
Roberta (Bert) Gelle* (HPN, SBS, Crohn’s) - Elyria, OH: Roberta has been on HPN since 1992, secondary to Crohn's disease. She, Ruthann Engle, and Jim Cowan lead a support group in their area. She is very willing to lend an ear to anyone who needs support, and has lots of enthusiasm.
 
Jane Golden (HPN, SBS) - Watertown. CT: As a result of short bowel syndrome, Jane has been on and off HPN since 1993. She feels strongly that survivors of short bowel need other survivors to talk to and see, since it is difficult for others to truly understand the lifestyle and concerns of people with the syndrome. She has worked hard to get back to a "normal" life and would like to share her experiences with fellow homePENers. Jane has a degree in Business Administration and is now retired from IBM. She is an Oley Board Member, enjoys horses and has a good sense of humor.
 
Bobbie Groeber (FC, Trauma) - Cinnaminson, NJ: Bobbie's husband, Bruce passed away in 1997 and left behind a terrific support person willing to stand behind other lifeliners who need assistance finding their way. She has over 14 years of experience of therapy "ins and outs" and various pumps and catheters. She also has experience with tube feeding her son.
 
Alicia Hoelle (HPEN, SBS) - Gibbstown, NJ: Alicia is Oley’s youngest RC, and was the first teen member of the Oley Horizon Society. She’s been on HPEN since birth due to hypoganglionis. She attends college and enjoys sharing her experiences with other youth. She is a great resource for parents of younger children too, and can help them understand the issues of a young HPENer. She values the friends she's made through Oley conferences and calls, and would like to make more!
 
Rose Hoelle (HPEN, Parent, SBS) - Gibbstown, NJ: Rose has been advocating for better support and information for families of homePEN children since her daughter Alicia was born with hypoganglionosis in 1985. Alicia has been on HPN since birth as well as on and off HEN. As an LPN and experienced caregiver, Rose can help other parents cope with the day-to-day care and ups-and-downs of life associated with these therapies. She has a terrific sense of humor and is a good listener.
 
Laura Keser (HPN, SBS) –Stillwater, OK: Formerly RC Laura Mucha of Gilbert, AZ, Laura recently graduated from Oklahoma State, majoring in psychology and minoring in sociology. She’ll be returning to AZ for graduate work in post-Traumatic stress. Laura has been on HPN since 1991, due to short bowel syndrome. She has experience with multiple catheters and a lot of experience with access issues and D-lactic acidosis.
  
Robbyn Kindle (TR, HPEN, Trauma) - Dallas TX: Robbyn has been an RC since 1998 and brings to our network a desire to share what she has learned about life and health issues. She spent some time initially "mourning" the loss of her gut and has moved on from depression. She has gone into the field of nutrition, and is now a Registered Dietitian. In 2000, Robbyn underwent surgery for a multivisceral transplant - small bowel, liver, pancreas, and kidney, and after a long, hard recovery and still somewhat dependent on HPN/HEN, is doing well. She is very willing to work with consumers living on nutrition support and anyone with transplant concerns.
 
Sue Koprucki (HPEN, Parent, Motility, SBS) - Williamsville NY: Sue had a frightening, isolating and frustrating time when her daughter Emily was diagnosed with short bowel and pseudo-obstruction and started on nutrition support. She feels it was the families she finally connected with who were in similar situations that helped her find the things she needed to make life work for her whole family, including her sense of humor! She hopes to make her presence known to regional medical personnel working with PEN, and help bring practical support and connection to people in northwestern New York State.
 
Barbara Klingler (HPN, SBS, Crohn’s) - Valkaria FL: Barbara has been dependent on HPN for many years due to short bowel syndrome. Remembering the isolation she felt when she first started the therapy in 1986, Barbara makes a special effort to reach out to new Lifeliners so they know they aren't the only ones fed intravenously. Barbara is also interested in discussing common consumer problems and new technology developments related to the therapy.
 
Laura Krueger(OFF, Parent, SBS) - Memphis, TN: Laura has been a supporter of Oley for many years. Her positive attitude and eagerness to help Seth lead a normal life led to a successful lengthening of Seth's bowel and transition to an oral diet. She offers other parents her experience with encouraging oral feedings, incorporating HPN into family life and getting through bad days.

Chuck Lindley (HPEN,Trauma,SBS,FC,Parent) - Burlington,N.C. : Chuck is a pharmacist in a hospital care setting and the father of a child who suffered a catastrophic accident with a riding lawnmower. The accident left the child HPEN dependant for his nutritional needs as he lost all but 6 inches of his small intestine. Chuck also has experience with ileostomy care from this as well. His son, Mason, passed away in 2005; but his legacy and continued impact lives via The Mason Lindley Miracle Foundation. The Foundation uses a unique outreach blending music and medicine to support children and families facing medical challenges.
 
Malisa Matheny (HPEN, Motility) - Jenkintown, PA: Diagnosed with pseudo-obstruction, and a mitochondrial disorder, Malisa has been on and off enteral since 1992 and on HPN since 1994. At age 25, Malisa is one of our youngest Regional Coordinators. She offers a compassionate ear to listen and her experience growing through the teen years with pseudo-obstruction as well as home enteral and parenteral nutrition. She's also terrific discussing transitioning from parent care to self care. Malisa is knowledgeable about summer camps that accept HPEN youths and other resources specific to young lifeliners. She graduated from Temple University's nursing program, is slowly working on to become a nurse practitioner and was recently married.
 
Patricia McKenney (HPN, Motility) - North Salem, NY: Patty brings to us the benefit of her experiences and frustrations surrounding pseudo obstruction. Married and mother of four, Patty found herself dealing with the issues surrounding HPN alone and hopes to offer a support system to others, remove the feelings of isolation and help others adjust to life on HPN.
 
Kathleen McInnes* (HEN, Motility) - Chicago IL: Diagnosed with MS and a motility disorder, Kathleen has been a regional coordinator for many years and is active in the Chicago-area support group. She has a wealth of experience in the enteral arena and is happy to be able to share. She can be especially helpful for patients struggling with the inability to eat. Kathleen has travel experience and has attended many Oley conferences. She is the mother of grown children.

Joan Medwar (OFF, Parent, Patient, Crohn’s, Celiac Disease) - Sharon, MA: Joan and her son, Michael, have had Crohn’s Disease for over thirty years. Michael was diagnosed at age nine, two years before his mother was diagnosed with the same disease. In addition to Crohn’s, which left her with an ileostomy, she also has Celiac Disease. Joan has another son, Greg, who is profoundly mentally challenged and requires total care. She managed to keep him home for 18 years before he was placed in a group home facility for the mentally challenged. Joan has dealt with the hospitalizations of both her sons, various treatments (physical therapy, homePEN, etc), and outside help such as home health aides, therapists, and respite care. At the present time, both Joan and Michael are off TPN and seem to be doing well. Greg requires pureed food due to dysphagia. In spite of her nursing background, Joan credits her personal life with helping her understand how a chronic illness impacts one’s life-emotionally, physically, and financially. Her hobbies, including crafts and gardening, help her cope with daily pressures. She also considers it very important to seek aid through support groups, government services, and psychological counseling. With all of her experience, Joan hopes to provide some insight and emotional support to people with chronic illness. Lastly, have a wonderfully supportive husband, such as Joan has, or family and friends, can make life much easier.
 
Lynda Nelson (HEN, Motility) - Fargo, ND: Lynda has been living permanently on HEN since 2005 when she was diagnosed with profound neuropathic antral hypomotility. In addition to her J-tube, she also has neurogenic bladder (self-cath/indwelling foley) and neurogenic bowel (colostomy). Lynda has experience with several types of HEN feeding tube pumps. Living with Celiac Disease also, which took 40 years to diagnose, has shown Lynda that people living with chronic medical issues can certainly help others no matter what their own challenges are. Because of a rare neurological voice disorder, Abductor Spasmodic Dysphonia, Lynda will not be able to talk to others by telephone, but is happy to communicate with any one via her Mailstation email (text only) and also by letter correspondence. Lynda hopes to help those in need by “listening,” as well as enhancing the Oley Foundation’s presence in the state of North Dakota and surrounding areas.

Kay Oldenburg (FC, SBS) - Syracuse, NY: Kay and her deceased husband, Clarence, were
co-founders of the Oley Foundation. She has a wealth of experience as the caregiver of a
terrific long-term HPN consumer. Kay is willing to speak to the issues that confront caretakers including when and how much support is appropriate. Kay can also speak to the benefit of connecting with others in similar situations - the motivating force behind the formation of the Oley Foundation!
 
Mary Patnode (HPN, SBS, Crohn’s) - Maple Grove, MN: Mary is married and a school psychologist. She has Crohn's disease and has been on HPN since 1982. Mary has experience with insurance and many other issues related to long term HPN. She has spoken at early Oley conferences.
 
Carol Pelissier (HEN, Motility) - Manchester, NH:  In 1994, Carol underwent a total colectomy due to colonic inertia, malabsorption, and chronic intestinal pseudo-obstruction. She began HPEN in 1995, remaining on enteral nutrition and periodically using parenteral nutrition. She has an ileostomy due to mega rectum and has endured over 44 surgeries. Carol's background as a Physician Coordinator/Medical Assistant has helped her deal with her many challenges, including being on disability. She helped organize an endometriosis support group and does Crisis Call. Having two chronic illnesses has given Carol personal experience to compliment her professional skills and she has learned to focus on what she can do rather than on the things she cannot. She is determined to ensure that people are not alone and to help others cultivate a positive attitude. Carol finds support from her son, her dogs, and her love of horses.
 
Judith Peterson (OFF, SBS, Crohn’s, Motility) – San Diego, CA: Judy joined the RC network in 1992. She has short bowel secondary to Crohn’s disease, and also scleroderma. With a master’s degree in pastoral counseling and a background in nursing, Judy is an excellent resource for consumers and family members. She recognizes the importance of consumers keeping themselves well informed, and is committed to helping consumers realize the positive elements of being on nutrition support. Judy has attended several Oley Conferences and can share what a great experience this can be — especially for new consumers.
 
Joseph Rogers (HEN) – New Bedford, MA:  As a teenager, Joseph was diagnosed with Achalasia, a rare and degenerative disorder of the esophagus. Joseph experienced progressive difficulty swallowing, until the year 2000 when his esophagus finally had to be removed. He temporarily relied on a j-tube immediately following the surgery, but was unable to thrive once it was removed. His j-tube was reinserted permanently in 2005. Joseph is a consumer who does “not miss eating at all.” He is a motivational resource for consumers. 

Valerie Schreiner (FC, Parent, SBS) - Stratford, WI: Valerie is married with two children and is a registered nurse. Her third child Becky was on HPN due to short bowel syndrome and lost her valiant battle with her disease post transplant in Madison, WI. Valerie's mission is to make the most of Becky' s life and will gladly help other parents sort through some of the decisions surrounding nutrition support and transplantation.
 
Dr(s) Erik and Cindy Schten (HPEN, Parents, SBS) – San Rafael, CA: Eric and Cindy are parents of two children, including Rachel. Born in 1997, Rachel was dependant on Parental Nutrition, secondary to short bowel, but has been off for several years. She remains on enteral nutrition and nighttime TF.  They have been amazed at the challenges they've encountered, and feel that as medical professionals, they have a unique opportunity to help other parents and consumers who aren't on the inside track. They have found Oley to be a great resource, and would like to share their experiences.
 
Eleana Shore (HEN, Parent, Motility) - West Hills, CA: Eleana's daughter Erin, born in 1996, is fed via G-tube due to multiple diagnoses, including GERD, food allergies and motility issues. She has undergone three Nissen Fundalplications. Eleana is a powerful researcher, very organized, and finds she is also developing some skills as a school advocate. She is fluent in English and Spanish. She and Erin are bright and fun, and willing to share their successes.
 
Bonnie Sjoberg (HPEN, Motility) - Milaca, MN: Diagnosed with pseudo-obstruction, Bonnie has been on HPN and/or HEN since April of 1995. Bonnie joined the RC team because she feels strongly about the importance of networking with fellow HPNers and group support. She offers fellow lifeliners her empathy, experience, strength, hope and encouragement. She's attended Oley Conferences, and enjoys sewing as a hobby.

Judi Smith (HPN, Motility)- Drums, PA: Judi has over 30 years experience with chronic intestinal pseudo-obstruction, the many peripheral issues that accompany neuro-muscular disorders, along with the issues all consumers of IV or tube feeding share. As the years have passed, her perspective of viewing life's glass as half-full has grown, as has having faith in the power of God and using creative methods of self-expression. One of the greatest things that she has learned is to view herself as an integral part of her team of health care workers. Oley has been most helpful in this regard. She has been on HPN since 1990, after 16+ years seeking an accurate diagnosis.
 
Tara Smith (OFF, Parent, SBS) – Pittsboro, IN: Mother of Aleah and twins Keely and Sky, Tara has had experience with both tube feeding and HPN, as Aleah has had short gut from birth. Thankfully, Aleah is currently off both therapies, but Tara continues to believe she can be a resource for her community and help nutrition support families connect to the support they need.

Carla Truman (Parent, HPEN) - Phoenix, AZ: Carla has eleven years of experience wtih HPN and EN since fostering her son Billy, now 21, since the age of 9. Billy had gastroschisis at birth and multiple surgeries since then, including a successful small bowel transplant in May 2007. Carla has experience with IEP's, social services and advocacy in other areas including learning disabilities and mental health issues.

Elizabeth Tucker (HPN, SBS, Crohn’s) - Bloomington, MN: Liz is a long time Oley supporter and former board member. She is now a part-time staff member, and Editor of the LifelineLetter. She joined the RC network in 1998. She is on HPN due to bowel resection secondary to Crohn’s disease. Warm and energetic, Liz has a wealth of experience in patient education and advocacy, particularly in dealing with the health care and insurance industries. Liz can also speak about her experience with many therapies for Crohn’s disease, including Remicaid (Inflaximab).
 
Ann Weaver* (HEN, Parent, SBS) - Naperville, IL: Ann is mother to Michael and Tim. Tim, born in 1994, was on both HPN and HEN until a few years ago. He has transitioned to enteral only now and is holding his own! He has short gut secondary to Hirschprung's disease. Ann is a great listener, and has some good experience with school advocacy as well.
 
Patty Woods (HPEN, Parent, Motility) - Hemet, CA: Patty is mother to Colyn, born in 1994 with a combination of dysmotility, neuropathy, common variable immune deficiency, and recently diagnosed with mitochondrial disorder. He has been on HPN since age two, and he also gets some J-tube feedings. Patty's husband Darrell is also active with Oley, and they lead a busy life with Colyn and their other four children Alyssa, Kyle, Kayla, and Brittany. Patty is very determined to bring Oley to families and anyone who needs support with HomePEN issues.
 
Rosaline Ann Wu (HPN, Motility) - Livonia MI: With a lifetime of abdominal problems and nearly twenty years of being on HPN, Rose and her husband Bill have decided to take each new day as a gift and, like any gift we receive from a loved one, we treasure it and remember to thank God for giving us this special day. Rose and Bill share the credit and responsibility for trying to keeping the folks in their area connected and benefit from a strong "family" of lifeliners in their area. Rose and Bill have attended several Oley conferences and have experience traveling with HPN. Rose was the first recipient of the Lenore Heaphey Grassroots Education Award in 1994.

Lynda Yeabower (HPN, SBS, Crohn’s) - Destin, FL: On HPN since April of 1992, Lynda offers support, information, and the reassurance that those at home on HPN are not alone. Fresh in her mind are the feelings of isolation and the comfort of finding others with similar conditions. Lynda has attended Oley conferences and can share her experience with traveling while on therapy. She loves being a grandmother.


* = Has information on support group meetings
HPN = has experience with parenteral (IV) nutrition
HEN = has experience with enteral (tube-fed) nutrition
HPEN = has experience with IV & tube-fed nutrition
TR = has experience with small bowel transplant
OFF = not on therapy at this time
SBS = patient has short gut or short bowel syndrome
Parent = parent of HPN or HEN consumer
Motility = consumer has a motility disorder, including pseudo obstruction
Crohn’s = consumer has Crohn’s disease Swallow = consumer cannot Swallow
Trauma = consumer on therapy from accident or Traumatic event
FC = former caregiver of HPEN consumer


Last updated
April, 2008