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.
Jameson Atkinson (HPN) - Watkinsville, GA: Jameson has been on HPN since 2001 due to short bowel syndrome. Since that time he has earned his Master's degree and is pursuing a career in education. Jameson knows how difficult it can be for young adults and teenagers who suddenly find themselves on IV therapy and hopes to be able to help others with their problems. He welcomes phone calls or emails and looks forward to reaching out to you!
Felice Austin (Parent), Mariah Abercrombie (HPN) - Henderson, NV: Felice is a single parent of two and is a trained social worker. Her daughter, Mariah, born in 1981, has been on HPN therapy since 1984 due to pseudo obstruction and is now in college. She also has a gastrostomy and ileostomy. Despite these challenges, Mariah travels, swims, jet-skiis, dates and has been to summer camp. Felice can speak about a wide range of parental challenges, including travel, insurance, advocacy and separation issues.
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 LifelineLetter 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.
Brenda Dunn (HPN, Motility) - joins us from Matamata, New Zealand. Brenda and Jodee Reid (see below) are helping Oley bridge continents. To this end, Oley has also formally partnered with the newly established PN-DU (for “parenteral nutrition down under”) support group. Brenda has been on HPN for ten years. Prior to that she was on enteral feeds with a PEG tube. Brenda writes that her “first year on PN was lonely,” until she found the U.S. Yahoo TPN support group and Oley. Now she has started a “down under” support forum and writes that she is in the process of starting a Web site that “will complement others well set up around the world, but deal with our local and cultural needs, and include clinical input.” Brenda can be reached at dunnb@no8wireless.co.nz
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 HPN-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.
Melissa Fedell (HPEN,
Motility) - She has been
on HPN for two and a half years and on HEN on and off for just over two years.
Melissa was diagnosed with idiopathic gastroparesis in 2003. She is currently
hooked up to IVs 24/7, but she tells us it has not held her back as much as one
would think. “I infuse IV hydration twelve hours every day and HPN twelve hours
every night. I wear my backpack all of the time and I believe that that is the
only outward sign that I have any sort of disability.
She has personal experience with PICC lines and with several types of HPEN
infusion pumps. Melissa
welcomes
hearing from other chronic HPEN patients in hopes that I can offer some of my
personal experiences to help you achieve your goals in life while maintaining
your own health.
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.
Lynda Heasley (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.
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.
Emily & Brian Hoopes
(HPEN, Parent, SBS) - Taylorsville, UT: Brian is a computer programmer at
a media company. Emily has worked as an administrative assistant, bookkeeper,
and ESL teacher, but right now is a stay-at-home mom. They've been best married
for 6 years. In November, 2008 they got a call telling them that they'd been
selected as adoptive parents for their son Patrick by his birth family. Patrick
had gastroschisis and a midgut volvulus in the womb that left him with just 15
centimeters of duodenum and a third of his colon at birth. Because he is their
first child, Brian and Emily got a crash course in parenting and in Short Bowel
Syndrome while they waited for the legal aspects of Patrick's adoption to be
completed. Patrick is TPN dependent and has had several Broviac and PICC lines.
Although he loves oral feeding, Patrick has a G-tube that has been used
periodically for enteral feeds and medications. Despite many infections and
other complications, including a cardiac arrest in 2009, Patrick is an active
one-year-old. He loves people. He greets everyone he meets with a cheerful "Hi".
He enjoys music, car rides, and anything with wheels, but his favorite toys
still include stethoscopes and empty syringes. He was listed for intestinal
transplant at Seattle Children's Hospital in April 2009 and is waiting for a
donor. During one of Patrick's many hospital stays, Brian and Emily were
approached by Patrick's gastroenterologist about creating a support group for
families of children with short gut syndrome. He had seen many new families
overwhelmed as they learned the ins and outs of tube feeding. He'd also seen the
ingenuity and strength of some more experienced families and hoped that bringing
the two groups together would provide support and help make caring for a child
with Short Bowel Syndrome easier. A month later, Brian and Emily launched their
support group and website
www.shortgutsupport.com a month later. The group provides an education
website and newsletter, an online message board, and in person meetings for
families of children with Short Bowel Syndrome. Having often turned to the Oley
Foundation website for help and information as they learned to care for their
own son, Brian and Emily also applied to become Regional Coordinators. Their
hope is that they can use their experiences to help other families to feel
confident and comfortable with their child's tube feeding.
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.
Read Seth's Story
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) -
Philadelphia, PA: Diagnosed with
pseudo-obstruction, and a mitochondrial disorder, Malisa has been on and off
enteral since 1992 and on HPN since 1994. 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.
John Reinhardt McDonald (HPN) - Bergen, Norway: born in New Brunswick, Canada and live on the Mirimachi until 1976. Moved to Norway with his Norwegian mother and lives just outside Bergen (on the west coast) with his wife and 13 year old daughter. He was diagnosed with familial poliposis in 1980. Surgery left him with an ileostomy. In 1983 he was diagnosed with Gardner's Syndrome and between then and 1991 he underwent multiple surgeries, endured chemotherapy and radiation treatment to halt the growth of tumors - which was successful. John sustained himself on HPN from 1990-92. He is currently off all intravenous nutrition but does supplement his hydration with IV fluids during the summer when fluid losses are greater and when he is sick via an AV fistula in his arm." He had been a board member for the Norwegian Association for Home Parenteral Nutrition for 15 years and now looks forward to sharing his time and enthusiasm in an effort to bring Oley Foundation programs and support to the folks in Norway! Do not hesitate to contact John if you plan to travel to Norway.
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.
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
retired 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.
Joanne Platt, (HEN, Motility) - Joanne has been married for thirty-six years and has two adult sons. She is an RN, but is presently disabled. Joanne underwent a subtotal gastrectomy for an abdominal tumor in 1995. Along with numerous other complications, she developed gastroparesis. “I struggled for ten years,” Joanne writes, “depending on oral nutrition (Ensure_UGH!), motility meds, and little amounts of food. I became very malnourished, which led to severe neurological symptoms. In 2006, I went on HPN via a PICC line. I had amazing results, but developed too many infections, and went through five lines in one year. I went to my first Oley conference in June 2006. I learned so much that by that August, I had a jejunostomy button inserted by a physician I learned of at Oley. I am now living the best quality of life in fourteen years.” Joanne’s diagnoses include partial gastrectomy, gastroparesis, malabsorption, dysmotility, GERD, pernicious anemia, iron deficient anemia, osteopenia, gastritis, and depression, “to name a few,” she adds. On being an Oley RC, Joanne says, “Being an RN has helped me to better understand my problems. I will always be a caregiver, and if I cannot work, I hope I can lend support to others.”
Roger & Teresa Poindexter (Parents) Kristy Poindexter (HPN, Motility) - Concord, CA: Roger and Teresa have been married for 33 years. They have three adult children: Kristy, Kyle,and Megan. Their oldest daughter Kristy became ill when she was 8 years old and thus began a long journey of doctors and hospitals. Kristy was originally diagnosed with Acahlasia a disease of the esophagus. Soon after she was misdiagnosed with Crohn's disease. Kristy was put on bowel rest and her first round of HPN. For a period of time she was able to tolerate HEN. She has been back on HPN for the last 10 years. Kristy is now a licensed esthetician. She enjoys knitting, cooking, gardening, and boating with her family. She lives her life one day at a time, and lives each moment to the fullest!
Jodee Reid (HPN, Parent, Motility) - Gibsonia, PA: Jodee is mother to eight year old Matisse who has been TPN dependent since birth due to chronic idiopathic intestinal pseudo obstruction. She is also mum to Rachel (18), Kalani (11) and Fraanz (5). Along with Brenda Dunn, a fellow kiwi, Jodee aims to bridge the gap between HPNers and in the USA and downunder in New Zealand and Australia. Matisse spent six years on TPN in New Zealand before they moved to Pittsburgh, Pa to wait for multi visceral transplant. Brenda and Jodee will work together to ensure more New Zealanders and Australians have access to the information and support provided by Oley. Recently, Jodee and Matisse attended their first Oley conference which they thoroughly enjoyed. Jodee is very excited to be part of the International support Oley offers and hope to hear from some fellow Kiwi's and Ozzies soon.
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.
Sanford Schimel (HEN) - Bronx, NY: Sanford Schimel started singing opera while still in high school and sang professionally for a number of years in Chicago during the late 70s and 80s. After moving to Washington, D.C., he became a travel agent, in a career that lasted for 13 years. He moved to New York City in 1996 to produce a play he'd written, while continuing as a travel agent. His career lasted until 2000, at which time he succumbed to addiction and went into long term residential treatment, where he discovered that his HIV had become full-blown AIDS. He became a substance abuse counselor in order to give to others what had been given to him - recovery (over 8 1/2 years and counting). In December of 2004, he was diagnosed with gastroparesis and on June 1st of 2005, his first enteral tube was inserted. Less than a month after the procedure, he attended his first Oley Conference. At various times, he has had a combination j-g tube, separate j and g tubes, a PICC line, and a Hickman Catheter. His current diagnoses are: gastroparesis, low motility, malabsorption, AIDs, peripheral neuropathy, autonomic neuropathy, iron deficient anemia, osteopenia, and osteoarthritis. His motto is "Curl up and die or stand up and fight."
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.
Jack Smith (HEN) – Southside, AL: Jack and Barbara
adopted their daughter Joy when she was 8 months old, she is now 15. Joy has a
history of bronchopulmonary dysphasia (BPD), asthma, colitis, Williams syndrome,
developmental delays and a serious feeding aversion. Joy receives her nutrition
through a g-tube. Their foster daughter, Jessica was born with encephalo cell
and also receives her nutrition through a g-tube. They have cared for Jessica
since she was 6 weeks old; she is now 11. In all, Jack and Barbara have fostered
18 medically-fragile children, 9 of whom had g-tubes.
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) –
Avondale, AZ: 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.
Tammi & Robert Stillion (HPN) - Wauseon, OH: Tammi has been on home parenteral nutrition (HPN) since 2001 due to short bowel syndrome from a tumor. She lives with her husband, Robert, in northwestern Ohio. Tammi currently utilizes a Port-a-Cath® to infuse her HPN, but she also has experience with Groshong® catheters and PICC lines. Robert is her caregiver and is committed to being an advocate for HPN users, as well as advocating for the rights and responsibilities of caregivers. Tammi and Robert would like to help in any way they can, and encourage people to contact them with questions or just to talk. They are involved with a local support group that is growing into northwestern Ohio and southern Michigan and encourage you to contact them for more information on the meetings. Robert and Tammi look forward to hearing from you!
Linda Stroshine (HPEN) - Toledo, OH: Linda was diagnosed with post-surgical gastroparesis after a 2001 Nissen fundoplication which severed her vagus nerve. She has been on TPN three different times and is currently receiving all nutrition through a J-tube. After becoming septic in 2006, Linda strives to remain on enteral feedings. Linda worked at an area hospital as a continuing medical education conference coordinator for 25 years before she retired on disability in April 2006. Since retiring, Linda has had increased success maintaining weight and controlling nausea. After an initial shock, Linda has come to terms with her “new friend”, the J-tube. She has been through the process of anger, grieving, self-pity and finally acceptance. Linda chooses not to live in the past, instead looking forward to the future, one day at a time. She still has some down days with depression, but they are less common now and serve to inspire Linda to get back up and trudge onward with her mission—to help others cope. Linda feels very fortunate to have the support of her husband, mother, father, two children and many close friends. They are always there to support her and help her get through the tough times. Linda has been attending a Toledo-area support group for enteral consumers since 2007. Her first Oley Conference was in 2009 and she credits the experience with giving her a renewed outlook on life. She saw first-hand how supportive Oley is and received tips to make her feeding tube regimen easier. She was most inspired seeing “little ones” manage their HPN and HEN. At first, Linda wondered why she got this condition but now she feels that she has an answer—to help others deal with tube feeding. Linda hopes that their support group will grow to support more Toledo-area homePEN consumers while spreading the word about the Oley Foundation.
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).
Carolyn Wheatley (HPN, Hollow Visceral Myopathy) - Christchurch, Dorset, UK: Carolyn has been friends with the Oley Foundation for many years while running a UK support group (PINNT) with fellow patients and caregivers. She has been on HPN for more than 25 years. PINNT endeavours to support people on home artificial nutrition, it offers advice and support as it’s needed. It is keen to offer the patients perspective to improve care, shape treatment plans and enable others to have a view of home artificial nutrition from the inside out. PINNT is a non political group but its members have no problem in speaking out. They have made great advancements in making healthcare professional listen to patients. PINNT is privileged to be part of a larger forum in the UK made up of doctors, nutrition nurses, dietitians, pharmacists and industry. PINNT is keen to support any fellow patients travelling to the UK offering help like a contact number and advice regarding facilities and procedures in the UK.
Ann Weaver* (HPEN, 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 (FC, Parent,
Motility) - Hemet, CA: Patty was mother to Colyn, (1994 to 2010) born with a
combination of dysmotility, neuropathy, common variable immune deficiency, and
recently diagnosed with mitochondrial disorder. He was on HPN since age two, and
he also received some J-tube feedings. Patty's husband Darrell is also active
with Oley, and they lead a busy life with their four other children Alyssa,
Kyle, Kayla, and Brittany, and grandson, Benjamen. Patty is dedicated to
bringing 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.
Aliza Chana Zaleon (HEN, Motility) – Chapel Hill, NC: Aliza’s journey with HPEN has been a complicated one. She had gastric bypass surgery in December 2004 and at the end of March 2005, developed severe vitamin deficiencies that destroyed the nerves in her legs, leaving her unable to walk more than short distances and dependent on IV vitamins. After a septic event in December 2005, her IV regimen was expanded to partial PN. In mid 2006 she developed motility disorders – gastroparesis, chronic intestinal pseudo-obstruction, colonic inertia, and achalasia – and had a g-tube placed to start HEN. She had several line infections until she was weaned off her partial HPN in May 2009. She is currently on continuous g-tube feeds with an elemental formula. She has underlying lung diseases (bronchiectasis, cystic fibrosis, and asthma) which are complicated by her motility disorders, and has pseudotumor cerebri and a VP shunt. She is heavily involved in G-PACT, a non-profit organization which supports patients and advocates for awareness of GI motility disorders, and runs a support group for motility disorders in Durham/Chapel Hill, NC.
* = 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: 5/5/10