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.
Rick Davis (HEN, Swallow) - Salt Lake City, UT: Rick began enteral nutrition
after a stroke in 2000 destroyed his ability to swallow anything. He
struggled for some time, and then was connected to the Oley Foundation,
where he found a wealth of information and folks willing to share their
experiences with him. His interaction with both consumers and professionals
at an Oley Conference convinced him that he could live a full and active
life even if he was on HEN. Rick now travels, skis, and hikes, and reaches
out to stroke victims and Oley members in an effort to give back some of the
assistance and inspiration he found. Click here to read more about Rick’s
story (link to profile)
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.
Ben Hawkins (HPN, SBS, Malrotation) - Cincinnati, OH: Ben has been on HPN
since 1980 when he was in high school, due to a malrotation of the small
bowel. He has been through the Social Security disability process. He has
experience with catheters, port-a-cath and several models of portable pumps.
He also has experience in organizing gatherings/support group meetings. He
is currently in charge of Oley’s equipment exchange program.
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.
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.
Sallie Simpson (HPEN, Motility) - Columbia, MD: Diagnosed with intestinal
pseudo-obstruction, Sallie has had extensive experience with HPN and enteral
nutrition since the fall of 1977. She has used many types of ports,
catheters and pumps and has worked through the "challenges" that only
chronic HPN can present. Through the continuous use of a pain pump the
reverse peristalsis is now kept in check and she has returned to an active,
fulfilling life, running a busy teaching and working stained glass studio in
the basement of her home. Sallie's goal as an RC is to extend the Oley
network to her area with an active support group. She wants to share her
experiences with others as well as her creative methods for coping and
achieving a fuller style of life. Sallie has been married for 27+ years to a
most supportive spouse. She is a retired psychologist.
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.
Patricia Tabron (HEN) - Chicago, IL: Patricia
has been HEN-dependent since 1990, with a diagnosis of Granulomas Gastritis
Disease. She has had multiple surgeries, including a total gastrectomy, and has
dealt with a variety of complications. In her free time, Patricia enjoys fashion
head-wrapping, reading, and speaking to groups. As a Regional Coordinator,
Patricia hopes to share Oley programs with her friends and neighbors, as well as
support fellow consumers. Says Patricia, “It is difficult for others to
understand the lifestyle and challenges that consumers experience daily, but I
know that spiritual healing comes from within you.”
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