2013 Spring Newsletter - United Leukodystrophy Foundation

United Leukodystrophy Foundation
You Are Not Alone
What’s inside...
Research..........…….......……2-4
Conference
Information.........…....................4
Family Conference
Registration Form……..............5
Memorials…………................... 6
Honors/
Sympathies.......…......................7
Paula Brazeal, Ron Brazeal and Hugo Moser, M.D.
Rear Office
hope
There is
always hope!
It’s For the
Children...
hope
Board/Mail Room
Vol. 31 . No. 2 . Spring 2013
Kirsten Kotlarchik,
Operations Manager
www.igive.com/ULF
2
Research
Cerebrotendinous Xanthomatosis Symposium
July 20, 2012
Summarized by William B. Rizzo, M.D.
Chairman, Medical & Scientific Advisory Board
and Andrea DeBarber, Ph.D.
The ULF hosted an international symposium on Cerebrotendinous Xanthomatosis (CTX) on July 20, 2012. The meeting was
sponsored by the Sterol and Isoprenoid Diseases Consortium of the NIH’s Rare Diseases Clinical Research Network. The ULF,
together with Manchester Pharmaceuticals, Inc. and Sigma Tau, Inc. generously supported the meeting. Dr. Andrea DeBarber
(Oregon Health & Science University, Portland, OR) organized the agenda and the sessions were chaired by Dr. Shailesh Patel
(Medical College of Wisconsin, Milwaukee, WI) and Dr. William Rizzo (University of Nebraska Medical Center, Omaha, NE).
The meeting concluded with remarks by John Wolf, ULF Board of Directors member and CTX Family Liaison (Aloha, OR).
CTX is a rare, later onset leukodystrophy with prominent neurologic symptoms and additional organ involvement. For many
years, it carried the distinction of being the only leukodystrophy with a specific and effective therapy. Although other leukodystrophies now have emerging treatments, none are as simple as CTX, which consists of oral supplementation with the bile acid
chenodeoxycholic acid (CDCA). Nevertheless, CTX is rarely recognized early when symptoms first develop and the diagnosis is
typically delayed for many years. By then, the disease has progressed in many patients to the point where CDCA treatment cannot completely reverse their symptoms. It is therefore critical that physicians consider the diagnosis of CTX in their patients and
test for it as soon as possible.
Over the past several years the ULF, largely through the work of Paula Brazeal, spearheaded efforts to ensure the continued availability of CDCA for CTX patients in the United States. The CTX Symposium was a tribute to her successful efforts to partner
with the FDA and the pharmaceutical industry to guarantee that CTX patients will continue to have the treatment they need.
Based on this collaborative effort, CDCA was recently approved by the FDA as an Orphan drug for the treatment of CTX and is
now available in the U.S.
This Symposium brought together leading CTX investigators along with CTX families, patient advocates and scientist participants from around the world. The speakers discussed the latest research advances in this disease including its clinical features and
complications, genetic causes, biochemical abnormalities and the most up-to-date treatments. Patient advocates were able to rub
shoulders with the experts and contribute to the meeting in practical ways. Representatives from Manchester Pharmaceuticals and
Sigma-Tau were present. Based on the contributions of all Symposium participants pressing new research directions for CTX
emerged. The discussion was lively and constructive. The combined experience with CTX brought by all of the participants to
this Symposium was unprecedented.
What is CTX?
 CTX is a rare leukodystrophy associated with other organ symptoms, including chronic diarrhea starting in childhood, juvenile cataracts, and abnormalities in balance, intellectual disability, peripheral neuropathy, dementia and psychiatric symptoms. The distinctive appearance of xanthomas (fatty tumors) in tendons should alert physicians about CTX.
 CTX is caused by mutations in a gene that is necessary for synthesis of bile acids (lipids that are required for fat absorption
from the diet). This block in bile acid synthesis results in accumulation of precursor lipids, particularly cholestanol, and
causes all symptoms of CTX, including formation of xanthomas in tendons and brain.
 CTX is easily diagnosed by measuring bile acid-related metabolites in urine or blood, but the diagnosis is usually delayed
until the combination of unusual symptoms appear, especially cataracts and xanthomas.
 CTX is the easiest leukodystrophy to treat. Orally administered bile acids (CDCA: brand name Chenodal) will prevent symptoms from developing if started early in the disease, and help improve some symptoms even in adults. It is therefore important to diagnose patients as son as possible so they can be treated.
 The early diagnoses of CTX by newborn screening would provide a way to detect all affected infants and start therapy at the
time of birth.
Professor Antonio Federico (Università degli Studi di Siena, Siena, Italy) gave a clinical overview of CTX. Symptoms usually
develop in the second and third decade of life, but may also appear in childhood or even infancy. Some patients present with neonatal cholestatic jaundice, but chronic diarrhea or juvenile cataracts are often the first signs. Osteoporosis frequently develops
over time. Neurologic involvement is heralded by the insidious appearance of intellectual impairment, ataxia, psychiatric problems, sensory motor neuropathy, myopathy, extrapyramidal signs, dementia and even a Parkinsonian syndrome in some patients.
The distinctive appearance of tendinous xanthomas, particularly involving the Achilles tendon, together with the neurologic disease usually prompts the diagnosis of CTX. Brain MRI demonstrates diffuse white matter disease and MR spectroscopy shows
reduced concentrations of NAA and increased lactate. Of 30 patients reviewed by Dr. Federico, cataracts were seen in 23 of
United Leukodystrophy Foundation
Spring 2013
Research
3
them, 25 had xanthomas, 14 suffered from diarrhea, 23 showed osteoporosis and 26 had intellectual deficiency. The disease is
caused by a genetic defect in bile acid synthesis and is inherited as an autosomal recessive trait. As emphasized by all of the
speakers, the symptoms may be prevented by early diagnosis and therapy with CDCA.
Dr. Maria-Jesus Sobrido (Fundación Pública Galega de Medicina Xenómica, Santiago de Compostela, Spain) discussed the
genetic defects that cause CTX. The disease is caused by mutations in the CYP27A1 gene that results in deficiency of sterol 27hydroxylase, an enzyme necessary for synthesis of bile acids by the liver. This mitochondrial enzyme is important in the conversion of cholesterol to bile acids (cholic acid and CDCA). Most mutations identified in CTX patients are point mutations that
cause missense, nonsense and splicing errors. Mutations are often private and unique to a family. Among 20 Spanish patients,
she found 38 different alleles that cause the disease. There was no discernible correlation between genotype and phenotype (age
of onset, symptoms or severity of disease). She pointed out the need for an up-to-date curated mutation database that would be a
resource for genetic diagnosis and evaluation of genotype-phenotype correlations.
CTX occurs more frequently in certain geographic regions of the world. Dr. Tzipora Falik-Zaccai (Western Galilee Hospital,
Naharia, Israel) reported on population-based genetic CTX screening studies in Israel. She described founder mutations in the
Druze isolate and North African Jews derived from Morocco. Among the Druze genetic isolate, which was founded more than
1000 year ago, she screened 2600 people and identified 250 genetic carriers (carrier frequency 1:11). The carrier frequency
among North African Jews was 1:50 to 1:70 individuals. She found reluctance by some people to get genetic screening owing to
a feeling of stigmatization, apprehension and existing social barriers. Nevertheless, two pregnant women underwent prenatal diagnosis for CTX and were found to carry affected fetuses. The babies were born and treated with CDCA beginning at 1 month of
age. They are now 7 years old and free of all symptoms.
Dr. Sandra Erickson (University of California, San Francisco, CA) described the Cyp27a1 gene knockout mouse model for
CTX. The mice have many of the biochemical features of the human disease including impaired bile acid synthesis, and increased cholestanol and bile alcohol metabolites. In plasma, cholestanol accumulation is seen by 3 months of age, but reverts to
normal as the animals age. In contrast, brain cholestanol and cholesterol increase progressively over time but they never reach the
levels seen in human disease. Despite these biochemical abnormalities, the knockout mice do not develop xanthomas or the severe neurologic manifestations seen in humans with CTX. Some mice develop premature cataracts and show subtle pathologic
changes of adrenal gland hypertrophy. The knockout mice appear to escape the more serious symptoms of CTX because their
metabolic pathways for bile acid synthesis differ slightly from humans and they are able to adapt to the genetic defect by inducing
alternate pathways that mitigate cholestanol accumulation. The genetic background of the mouse strains may also influence expression of the disease. A better animal model for CTX is required to help understand the human disease and to test new treatment strategies for those patients who do not respond to CDCA.
Dr. Kenneth Setchell (Cincinnati Children's Hospital Medical Center, Cincinnati, OH) described methods for biochemical diagnosis of CTX, which is one of 9 disorders of bile acid synthesis. The sterol 27-hydroxylase or CYP27A1 enzyme deficient in
CTX is involved in multiple pathways for the synthesis of bile acids. The major (classical) pathway is initiated by hydroxylation
of the cholesterol nucleus by cholesterol 7-hydroxylase or CYP7A1. The 7-hydroxycholesterol formed is converted by 3hydroxy-5-C27-steroid dehydrogenase to the bile acid precursor 7-hydroxy-4-cholesten-3-one, which can form multiple metabolites that undergo side chain hydroxylation by CYP27A1 in the pathway to bile acids. Other pathways for bile acid synthesis
(including the acidic pathway) are initiated by hydroxylation of the cholesterol side chain by CYP27A1. Dr. Setchell has
screened more than 11,000 patients for bile acid pathway disorders by measuring bile acid synthetic metabolites in urine, serum or
bile using FAB-mass spectrometry. Using only 50 microliters of urine, negative ions of bile acids and related metabolites are
readily detected. Deficiency of CDCA and cholic acid along with elevations in bile-alcohol metabolites are typically seen in CTX.
Serum cholestanol is elevated, whereas serum cholesterol is normal. He emphasized the importance of screening all infants with
neonatal cholestasis since defects in bile acid synthesis, including CTX, can present in the first 2 months of life.
Dr. Andrea DeBarber (Oregon Health & Science University, Portland, OR) described an improved, highly sensitive test for
CTX that uses less than a drop of blood. The standard blood test for CTX typically measures cholestanol levels, which are elevated about 5- to 10-fold above normal. Dr. DeBarber treated plasma samples with Girard’s P and other derivatizing reagents to
form derivatives of bile acid pathway metabolites that are readily detected using LC-ESI-mass spectrometry. CTX patients were
found to accumulate 180-fold more of the bile acid precursor 7-hydroxy-4-cholesten-3-one than controls. This bile acid precursor can be 12-hydroxylated to form 712 -dihydroxy-4-cholesten-3-one. Levels of 712 -dihydroxy-4-cholesten-3-one,
were elevated by 3800-fold in CTX. The measurement of these bile acid precursors represents a much better test for identifying
CTX patients than more conventional cholestanol measurements. Dr DeBarber was able to detect elevated levels of 712dihydroxy-4-cholesten-3-one in dried bloodspots collected from newborns with CTX. The method may form the basis for future
newborn screening for CTX.
United Leukodystrophy Foundation
Spring 2013
Research/Conference
4
Dr. Ingemar Björkhem (Karolinska University, Huddinge, Sweden) discussed the pathogenesis of brain xanthomas in CTX. He
noted that the xanthomas in the brain are composed of both cholestanol and cholesterol. Neither of these sterols can pass through
the blood-brain barrier (BBB), so their accumulation in xanthomas reflects local synthesis in brain. Dr Björkhem experiments
suggest brain xanthomas can develop in CTX due to increased availability of a cholestanol precursor derived from the peripheral
circulation. The bile acid precursor 7-hydroxy-4-cholesten-3-one, which is elevated in CTX, can cross the BBB and may be an
important precursor for cholestanol synthesis in brain. Dr Björkhem proposed that treatment with CDCA helps resolve brain xanthomas due to suppression of CYP7A1- initiated bile acid synthesis and results in a consequent decrease in blood 7-hydroxy-4cholesten-3-one. Moreover, cholestanol itself increases the rate of cholesterol synthesis, which may contribute to the cholesterol
content of the xanthomas. Thus, brain xanthomas develop in CTX because of the increased availability of a cholestanol biosynthetic precursors derived from the peripheral circulation, together with the cholestanol-induced up regulation of brain cholesterol
synthesis.
Among all leukodystrophies, the treatment of CTX is remarkable for its simplicity and effectiveness. Dr. Gerald Salen (New
Jersey Medical School, Newark, NJ) discussed his findings that the metabolic defect in hepatic sterol 27-hydroxylase preventing
synthesis of the bile acid end product, CDCA, could be treated by supplementation with CDCA (brand name Chenodal). CDCA
that is normally produced regulates bile acid synthesis by suppressing CYP7A1- initiated bile acid synthesis. Impaired synthesis
of CDCA in CTX leads to unrestrained CYP7A1-initiated bile acid synthesis and high levels of bile acid precursors like 7hydroxy-4-cholesten-3-one and cholestanol accumulation. Oral administration of CDCA replaces this missing bile acid and down
regulates CYP7A1 activity, thereby decreasing bile acid and cholestanol synthesis. Over time, CDCA therapy lowers cholestanol
levels in the body, halts the progressive growth of xanthomas and may even improve some symptoms. It is clear, however, that
therapy with CDCA is most effective in preventing symptoms rather than reversing them.
Dr. James Heubi (University of Cincinnati College of Medicine, Cincinnati, OH) described an alternative therapy for children
with CTX using oral cholic acid supplementation, which has no heptotoxicity compared to CDCA and also inhibits production of
bile alcohols quite effectively. He has treated two CTX infants with cholic acid and improved their cholestatic liver disease. After 10 years, the patients are doing well on cholic acid alone. For patients with CDCA side effects or in pediatric patients, cholic
acid is a potentially useful therapy. Further long-term studies are needed to determine its effectiveness for CTX.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Future of Leukodystrophy Therapy is Now!
Save the date for the ULF Scientific Meeting & Family Conference. The Scientific Meeting is on Thursday,
July 18th and the Family Conference is on Friday, July 19th and Saturday, July 20th.
Family registration cost is $200.00 per person for ULF members, children under 18 are free. Annual dues are
$35.00 per individual/family and $70.00 for professionals/organizations and are due at the time of registration
for the conference, if not yet paid. 2013 annual membership dues notices were recently mailed, your prompt response is greatly appreciated!
Confirmed speakers are:
Orna Elroy-Stein, Ph.D., Tel Aviv University, Israel, VWM
Joseph Hacia, Ph.D., Univ. of California, San Francisco, CA, Zellweger Syndrome
Paola Leone, Ph.D., U of Med & Dent of New Jersey, Camden, NJ, Canavans
Ann Moser, B.A., Kennedy Krieger Institute, Baltimore, MD, Newborn Screening
Aurora Pujol, M.D., Ph.D., Institut d'Investigació Biomedica de Bellvitge, Barcelona, Spain, AMN
William Rizzo, M.D., Univ. of Nebraska Medical Center, Omaha, NE, Chair, ULF Medical and Scientific Advisory Board
David Rowitch, M.D., Ph.D., Univ. of California, San Francisco, CA, PMD
Steve Steinberg, Ph.D., Kennedy Krieger Institute, Baltimore, MD, Peroxisomal Disorders
Marjo van der knaap, M.D., Ph.D., VU University medical Center, Amsterdam, The Netherlands, VWM
Adeline Vanderver, M.D., Children’s Hospital National Medical Center, Washington, DC, Myelin Disorders
Kathleen Zackowski, Ph.D., O.T., Kennedy Krieger Institute, Baltimore, MD, Heterozygotes
Other world renowned leukodystrophy scientists and researchers will also be present. An agenda with the sessions and times will be
posted on our website soon. A registration form is included in this newsletter so you can register early and have plenty of time to make
travel arrangements to DeKalb, Illinois at reasonable rates.
United Leukodystrophy Foundation
Spring 2013
Family Conference
5
The Future of Leukodystrophy Therapy is Now!
NO WALK-INS
Please Register by
Monday
July 8, 2013
FAMILY REGISTRATION FORM
LEUKODYSTROPHY MEETING
July 19th & 20th, 2013
First & Last Name:
First & Last Name:
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DOB:
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_____ Staying: Thursday July 18, 2013
_____ Staying: Friday July 19, 2013
_____ Staying: Saturday July 20, 2013
_____ Dinner: Thursday July 18, 2013
_____ Dinner: Friday July 19, 2013
_____ Dinner: Saturday July 20, 2013
Check in at hotel 3:00p.m. (Central Time)
Return Registration Form To:
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FAX registration form to: (815) 748-0844
or call (800) 728-5483 - (815) 748-3211
or e-mail: [email protected]
Attendees for the ULF Meeting will pay $200.00 registration fee per person ($100 non-refundable). One
day only $100.00 registration fee per person ($50.00 non-refundable). Children no charge. Hotel room
costs are to be paid directly to the hotel at $89.99 plus tax per night. 2013 Annual Dues ($35.00) will be
added if not yet paid. A registration form must be submitted to the ULF with a check or credit card payable to the ULF. Hotel charges will be separate and paid directly to the hotel.
Registration deadline is July 8, 2013.
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United Leukodystrophy Foundation
Spring 2013
Memorials
6
IN MEMORY OF…
Ramon Abanilla
Ligaya Pollosco
Mari Lea Allison
Audrey H. Kinney
Michael Alm
J. Brian & Kathleen Murphy
Thomas Andre
Gail & David Andre
Blake Andrews
Mevin & Mamie Andrews
Sherri Andrews
Frank Beal
Rob & Kathy Childers
Sabrina Standifer & Duane Hawkes
Leroy & Pat Lehman
Stephen & Debra Lewis
Dustin Looney
Brian & Lisa McCoy
Sandra Otto
Wayne & Carolyn Ray
Frances Jo-An Rayburn
Melvin Leif Rayburn
Gail & Stan Slater
Haley Slater
Allen & Lenora Wilson
Phillip Andrews
Melvin & Mamie Andrews
William Armstrong
Fortuna & Steven Scheige
Jacob Townsend Ayers
Cicero & Alice Ayers
Thomas Baldwin
Gerald & Merlee Adkins
Richard & Deana Everill
Maryellen Garrison
Herman & Carol Miller
Amity & Paul Noltemeyer
Mary Ruter
Ellen Borchers
Alfred & Mildred Borchers
Kim Borchers
Alfred & Mildred Borchers
Howard Brazeal
Patrick & Pam Mumey
Paula Brazeal
Patrick & Pam Mumey
Ron Brazeal
Patrick & Pam Mumey
Timmy Brazeal
Patrick & Pam Mumey
Arnold Brown
Leslie Sisco
David Brown
Lee & Martha Hamilton
Bob & Anne Siress
Linda Brown
Lee & Martha Hamilton
Bob & Anne Siress
George Buckner
Sally Buckner
Dorothy Busker
Butch, Colleen & Matt Johnson
Vinny Capozzi
Hugh & Kathryn Aberman
Alert Pharmacy Services
Mark & Marion Bittner
Lisbeth Capozzi
Carlisle Carrier Corporation
Jeffrey Cramer
Drs. Kearns, Ashby, Rajchel &
Assoc.
Terry Hegglin
Marvin & Joan Hoke
Mark & Lisa Hummel
InsuranceNewsNet.com, Inc.
Steve & Sylvia Kinney
LeadingAge PA
Maxim Healthcare Services
Daniel Natirboff
Pickering Manor
Patricia Putz
Sonya Ranker
Ronald Reeder
Holly Rosini
Richard & Julie Ruda
Terri Sherman
South Middleton Elementary PTO
William F. & Roger M. DeCarbo
Funeral Home
Nora Winkelman
Ziegler & Co.
Jessica Carter
Debby & Ralph Morris
Meagan Casey
Timothy Casey
Homer Coffman, III
Jack & Linda Sheetz
Thomas Coxworth
Andrea Billhardt
Michael Day
Jim & Heather Day
William Dorn
Jody & Rick Vogan
Katie Dosal
Cindy Howard
Andrew Fingeroot
Bruce & Bea Nahon
Donald Fleming
Keith & Martha Yale
Kenneth Fleming
Keith & Martha Yale
Maxwell Foutch
Alan & Joann Mitchell
Jenna Lee Fulmer
Dorothy M. Keller, Esq.
Alison Marie Gartig
Barbara & Bill Gartig
Todd William Gillespie
Ken & Geraldine Gillespie
Lauren Glenn
Thomas & Anne Glenn
Samuel Goldman
Nidec Motor Corporation
Michael Grandazza
Luella & Peter Grandazza
United Leukodystrophy Foundation
Ken Griffiths
William & Bonnie Bailey
George Haines
Cheryl Haines
Russell Allen Hargrove
Donna Parkes
John Horvat
John & Regina Horvat
Russell Horvat
John & Regina Horvat
Michael Jungwirth
Joan Jungwirth
Clint Karlsrud
Chris & Amy Karlsrud
Shane Keeler
Donnie & Mickey Mitchell
Kelli Kovacs
Roberta Johanson
Joseph Micheal Kulbacki
H. Leigh & Sharon Severance
Nicholas Lamendola
Kimberly Lamendola
Douglas Lewis
Orville & Stephanie Lewis
Richard Louisell
Patti & Larry Chapman
James Mahan, Jr.
James & Mary Mahan
Kelsey R. McDonald
Alice Miller
Natalie Meadows
Garry Meadows
Dylan Carl Mercer
Ligaya Pollosco
Ladd Molin
Patrice & Alan Solyntjes
Ryan Monaghan
Michele & Robert Curtis
Jaybird Monroe
Ed & Maribeth Monroe
Jeffery Monroe
Ed & Maribeth Monroe
Heather Morris
Steve Morris
Dr. Hugo Moser
Ep Haven
Alison Rachael Muller
Cynthia & Jay Muller
Jessica Naugle
Bill & Felicia Glass
Daniel O’Brien
James & Karen Baumhardt
Trace & Cindy Blakely
Sister Mary Noel Brown
Thomas & Bonita Eiring
Mary Hays
James & Cynthia Koffman
John Korb
Faith Krueger
Robert & Rose Loehr
Red Cabin Hospitality, Inc.
Timothy & Jelaine Scannell
Thomas & Suzanne Wegner
Kirk Padgett
Betty Padgett
Trey Padgett
Betty Padgett
Luka Pelka
Robert & Virginia Traynor
Talamus B. Perry
Delonsaletta Perry
Eileen Peterson
Laura Gershenson
Debbie Sukenic
Grace Ragon
Kelly Biller
Nathan & Marla Chandler
Mr. & Mrs. Wilfrid Dues
Mr. & Mrs. Kendal Peck
Margaret Pennucci
Michael & Sherri Warren
Timothy & Jill Weber
Ronald & Wanda Winkle
Kim Raleigh
Jerry & Connie Altman
Mark & Kim Bradford
Marc & Linda Ingraham
Dr. Charles Peters
Peter & Donna Mae Raleigh
Phil & Pat Raleigh
Thomas Reising
Carol & Jim McGinley
Elena Routhier
Jeanine & Dennis Routhier
Jonathan & Lara Routhier
Noah Routhier
Jeanine & Denis Routhier
Dorothy Russell
Nichole & Edward Humes
Lawrence & Janice Russell
Ronald Sato
Alice Sato
Christopher Stewart
Donald & Bonnie Stewart
Alyssa Stramel
Tom & Stephanie Garrity
Matthew Sundstrom
John & Margaret Phillips
David Riciotti
Mitchell Sundstrom
John & Margaret Phillips
David Riciotti
Nathaniel Kent Thomas
Kim Thomas
Brenton Troup
James & Susie Troup
Thomas Isaiah M. Wallace
Tenny Henderson
Spring 2013
Honors/Sympathies
IN HONOR OF…
Joseph Abell
Dennis & Deborah Benson
The Backenson Family
Joseph & Christina Conroy
Christopher Benson
Roxana Habibi
Asher Fleming Bloxom
Keith & Martha Yale
Olivia Borodychuk
Chad & Lisa Borodychuk
Alex Bouley
Dr. & Mrs. Bernard Levine
Charna Levine
Gregory Brown
Mary Wheeler
Tory Brown
Jeff Brown
7
The Capozzi Family
Alert Pharmacy Services
Aidan Chapleau
Marla & Ron Chapleau
Harold Childress
Tenny Henderson
Chase Comer
Tom & Allison Comer
Kelly Cooper
Patricia & Richard Teachout
Nicholas Devoss
H. Leigh & Sharon Severance
Heather DeWitt
Marilyn Boersma
Skyler Di Palma
Linda Savana
Zane Dial
Carol Smiskol
Noam Dichek
Dina Dichek
Barbara Easley
Tenny Henderson
The Gates Family
Deborah Goerlich
Kaitlyn Fryman
Tammy McAllister
Sharpsburg Country Homemakers
Matt Gagliardi
Joseph & Christina Conroy
Cody Gates
Deborah Goerlich
Janet Grady
Ron & Jean Kauffman
Connor Groel
Chip & Linda Ridewood, III
Joshua Haydt
Harry & Patty Haydt
Anne Hinson
Debbie Hoffman
Ethan Jeffcoat
James Mahern, Sr.
Paul Korth
Duane & Kimberly Ostdiek
Thomas Kulbacki
H. Leigh & Sharon Severance
Ryan Miller
Alice Kloos
Devon Neff
Marissa Neff Maher
Daniel Perrine
Mark & Jennifer Sigmund
Allison Pizzica
Dr. & Mrs. Al Pizzica
Adam Smith
Patricia De Majistre
Tammy Truman
Kathie & Donald Truman
Sympathies
Blake Andrews: February 7, 2013, loving son of Sherri and Darrell Andrews and loving brother of Elizabeth Andrews Ballinger, Waco, TX.
Thomas J. Baldwin: December 16, 2012, beloved husband of Evelyn Hope (nee Hess) and loving father of Maryellen (Lynn) Garrison and Sharon Baldwin Sittner, Fairfield, OH.
Caysen Landry Barnett: 5 yrs old, July 16, 2012, loving son of Amanda Barnett Moody and Dusty Moody and
loving grandson of Larry and Cathy Ferguson, Amarillo, TX.
Ann Jacobs Biraben: 66 yrs old, March 1, 2013, loving partner of Jack Berlien and loving mother of Lilli Joncas,
Alexandria, VA.
Nathaniel John Butler: 37 yrs old, February 12, 2013, loving son of Robert Leo and Wanda Jane (Dillon) Butler,
loving brother of Chris and Angie Butler and loving father of Jacob Butler-Piqua, West Milton, OH.
Vincent “Vinny” Louis Capozzi: 8 yrs old, February 23, 2013, loving son of Louis and Shelly Capozzi, Jr., loving
brother of Louis J. Capozzi, III, Victor Louis Capozzi and Liza A. Capozzi, Carlisle, PA.
Kathryn Claire Hance: February 22, 2012, loving mother of Karen Hance Duffey, Kathryn Lynn Hance, Kimberly
Hance Pulliam and Kristine Hance Dosal, Tampa, FL.
Ronald J. Klein: January 27, 2013, loving husband of Nina (nee Scalise) Klein and loving father of Ricky, Saint
Louis, MO.
Daniel Thomas O’Brien: 51 yrs old, January 2, 2013, loving husband of Patty and loving father of Joshua Daniel
O’Brien, Eden, WI.
Eileen Peterson: January 6, 2013, loving mother of Nancy Maurer, Sandra Talbird and Kristin Davis, Coppell, TX.
Kimberly Julia Raleigh: 28 yrs old, January 13, 2013, loving daughter of Philip A. and Patricia J. (Keiser) Raleigh
and loving sister of Jason, Battle Creek, MI.
Dorothy Russell: 87 yrs old, February 26, 2013, beloved wife of Elmer W. Russell and loving mother of Sandra
(Keith) Madden, Sharon Spinneweber and Linda (Scott) Houston, Pleasant Hills, PA.
Georgina Wyse: March 27, 2011, loving daughter of Madeline and Ian Wyse, United Kingdom.
United Leukodystrophy Foundation
Spring 2013
You Are Not Alone
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