2014 Spring Newsletter - United Leukodystrophy Foundation

Transcription

United Leukodystrophy Foundation
You Are Not Alone
What’s inside...
Conference Information/
Agendas.................................2-7
Family/Individual
Registration Form......................8
Professional Registration Form 9
Memorials/Sympathies/Honors 14
Benefit Drawing.......................14
Go Green.................................15
2014 Baltimore Conference
Registration is NOW OPEN
Register today to get the Early Bird Rate
hope
There is
always hope!
It’s For the
Children...
hope
Vol. 32, No. 1. Spring 2014
www.igive.com/ULF
2
Annual Conference Information and Meeting Agendas
CONFERENCE REGISTRATION IS NOW OPEN!
Our Annual Meeting is hitting the road and heading to Baltimore, Maryland, the home of much history in
the leukodystrophy world! This year we have decided to hold a joint meeting with ALD Connect in
order to synergize efforts to advance research and treatment. While we are two separate organizations,
there is significant overlap in participants and goals. We see this as an opportunity to collaborate, share
knowledge and experience and to join forces to eradicate all leukodystrophies. All meetings will be at the
Embassy Suites Inner Harbor in Baltimore.
The ALD Connect meeting will commence on Wednesday, July 30th. The Scientific meeting will be on
Thursday, July 31st. On Friday and Saturday, August 1st and 2nd, the joint family meeting will be at the
Embassy Suites Inner Harbor where ALD Connect and the ULF will present the ongoing efforts dedicated
to outcome measures, biomarkers, drug discovery and dissemination of information and highlight advances
in other leukodystrophies inviting discussion on research from all around the world! The joint meeting will
come to a close with a beautiful cruise in the Baltimore Harbor on Saturday evening followed by a breakfast
buffet on Sunday morning.
The following agendas are posted for information purposes and subject to change:
ALD Connect Meeting
Wednesday, July 30th, 2014
1:00 pm:
Welcome and Introductions
Amber Salzman, Clerk of ALD Connect
1:30 pm:
Where are we? Past, present and future of ALD Connect
Florian Eichler, Chair of ALD Connect
2:00pm:
Report from Work Groups
Alex Sherman, Gerald Raymond, John Fink, Keith van Haren
2:30 pm:
Update on PCORI
Sarita Wahba, PCORI Program Officer
3:00 pm:
Afternoon Break – Discussion over Coffee
3:30 pm:
Report from Treasurer
Kathleen O’Sullivan-Fortin, Treasurer of ALD Connect
Spring 2014
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ALD Connect Meeting (continued)
4:00 pm:
Fundraising Efforts
Ben Lenail, Business Strategy Officer of ALD Connect
6:00 pm:
Joint Dinner with the ULF Medical Advisory Board and Board of Directors
Phillips Seafood Restaurant, 601 E. Pratt Street, Inner Harbor
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
United Leukodystrophy Foundation/ALD Connect Scientific Meeting
Thursday, July 31st, 2014
8:00 AM
Introductions and Welcomes
William Kintner, D.Min, Th.M., President of ULF
William Rizzo, M.D., Chairman, Medical & Scientific Advisory Board, ULF
Ann Moser, B.A., Vice-Chair, Medical & Scientific Advisory Board, ULF
Florian Eichler, M.D., ALD Connect
**Session 1: Focus on ALD - Moderated by Florian Eichler, M.D.
8:15 AM
Michele Caggana, Sc.D., FACMG – Newborn Screening Program, New York State Department of
Health, Wadsworth Center, Albany, NY
Newborn screening for X-ALD: the initial New York experience
8:45 AM
Troy Lund, M.D., Ph.D. – University of Minnesota, Minneapolis, MN
Biomarkers in X-ALD
9:15 AM
John Fink, M.D. – University of Michigan, Ann Arbor, MI
Insight into the pathophysiology of the axonopathy in AMN
9:45 AM
Kathy Zackowski, Ph.D., O.T. - Kennedy Krieger Institute, Baltimore, MD
Gait abnormalities in adrenomyeloneuropathy
10:15 AM
BREAK
10:30 AM
Peter Barker, Ph.D. – Johns Hopkins University, Baltimore, MD
Magnetic resonance spectroscopy in leukodystrophies
11:00 AM
Johannes Berger, Ph.D. – Medical University of Vienna, Vienna, Austria
Pharmacologic induction of ABCD2 as a possible therapeutic approach in
X-linked ALD
11:30 AM
Florian Eichler, M.D. – Massachusetts General Hospital, Harvard Medical School, Boston, MA
Gene therapy for X-ALD
12:00 PM
LUNCH
Spring 2014
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United Leukodystrophy Foundation/ALD Connect Scientific Meeting (continued)
**Session 2: Focus on other leukodystrophies – Moderated by William Rizzo, M.D.
1:00 PM
Marjo van der Knaap, M.D., Ph.D. – VU University Medical Center, Amsterdam, The Netherlands
A new class of leukodystrophies: defects in mitochondrial and cytoplasmic tRNA synthetases
1:30 PM
Ian Duncan, BVMS, Ph.D. – University of Wisconsin, Madison, WI
Modeling the natural history of Pelizaeus Merzbacher disease
2:00 PM
Mel Feany, M.D., Ph.D. – Harvard Medical School, Boston, MA
Drosophila model of Alexander disease
2:30 PM
Gustavo Maegawa, M.D., Ph.D. – Johns Hopkins University, Baltimore, MD
Development of high-throughput screening assays for therapeutic small molecules for Krabbe Disease
3:00 PM
BREAK
3:15 PM
Nancy Braverman, M.S., M.D. – McGill University, Montreal, Canada
Peroxisomal biogenesis disorders: high throughput screening for drugs that correct peroxisome import and clinical trial of Betaine therapy
3:35 PM
[Alessandra Biffi, M.D. – San Raffaele Scientific Institute, Milan, Italy]
Clinical trial of ex vivo gene therapy for metachromatic leukodystrophy
3:55 PM
[Adeline Vanderver, M.D. – Children’s Hospital National Medical Center, Washington DC]
Using whole exome DNA sequencing to search for undiagnosed leukodystrophies
4:15 PM
Matthias Eckhardt, Ph.D. – Rheinische Friedrich-Wilhelms University, Bonn, Germany
A new mouse model to study the molecular pathology of Canavan disease
4:35 PM
Reuben Matalon, M.D., Ph.D. – University of Texas Medical School, Galveston, TX
Gene therapy for Canavan disease
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ULF/ALD Connect Joint Family Meeting
Thursday, July 31st - Sunday, August 3rd, 2014
Thursday, July 31st
4:00 pm
Registration & Hospitality
5:30 pm
Dinner
7:00 pm
Biochemistry of Leukodystrophies (Q&A)
Paul Watkins, M.D., Ph.D.
Spring 2014
AAnnual Conference Information and Meeting Agendas
5
ULF/ALD Connect Joint Family Meeting (continued)
Friday, August 1st
7:00 am - 8:00 am
Registration
8:00 am - 8:15 am
Welcome and Announcements
William Kintner, D.Min., Th.M., ULF President, William Rizzo, M.D., Chairman ULF Medical & Scientific
Advisory Board, and Florian Eichler, M.D., Director of ALD Connect and ULF Medical Advisory Board Member.
8:15 am - 9:15 am
Infrastructure, Governance and Funding for ALD
Alex Sherman, Clinical Database Specialist, Ben Lenail, ALD/AMN Advocate, Florian Eichler, M.D., Ali Fatemi,
M.D., and Mark Bostock.
9:15 am - 10:15 am
Disease Mechanisms for ALD
John Fink, M.D., Robert Brown, M.D., Ph.D., Tara O’Meara, and Sanjay Magavi.
10:15 am - 10:30 am
Break
10:30 am - 11:30 am
Outcome Measures for ALD
Gerald Raymond, M.D., Kathleen Zackowski, Ph.D., O.T., Troy Lund, M.D., Ph.D., and Robert Brown, M.D., Ph.D.
11:30am - 12:30 pm
Dissemination of ALD-related Disease Information
Amber Salzman, Ph.D., Keith van Haren, M.D., Josh Bonkowsky, M.D., Ph.D., and Leila Jamal, ScM., C.G.C.
12:30pm - 1:30 pm
Lunch
1:30 pm - 1:40 pm
Announcements
William Kintner, D.Min, Th.M., ULF President
1:40 pm - 2:20 pm
Overview of Leukodystrophies
Deborah Renaud, M.D.
2:20 pm - 2:40 pm
Adrenal Dysfunction in ALD
Aida Lteif, M.D.
2:40 pm - 3:30 pm
Discovery of New Leukodystrophies
Marjo van der Knaap, M.D., Ph.D., Sakkubai Naidu, M.D., Genevieve Bernard, M.D., MSC, FRCPC, and Adeline
Vanderver, M.D.
3:30 pm - 3:45 pm
Spring 2014
6
3:45 pm - 4:20 pm
Symptom Management and Health Related Costs of Leukodystrophies
Josh Bonkowsky, M.D., Ph.D. and Keith Van Haren, M.D.
4:25 pm - 4:55 pm (Concurrent Sessions)
New Links Between Alexander Disease and other Neurological Disorders
Albee Messing, V.M.D., Ph.D.
5:00pm - 6:00 pm
Awards, CADASIL Grant Announcement and Wine Tasting
William Kintner, D.Min, Th.M., ULF President and William Rizzo, M.D., Chairman ULF Medical & Scientific Advisory Board.
6:00 pm - 7:00 pm
Dinner
7:15 pm
Informal Group Meetings:
AMN Men
Doug Bermel, David Edwin, Ph.D., Florian Eichler, M.D., Charles Peters, M.D., and Wolfgang Koehler,
M.D.
ALD Heterozygotes
Sakkubai Naidu, M.D., Deborah Renaud, M.D., Hong Brereton, M.S., R.D., Lena Bezman, M.D., M.P.H.,
Ann Moser, B.A., and Kathleen Zackowski, Ph.D., O.T.
Youth Group
Leila Jamal , ScM., C.G.C.
7:00 pm - 10:00 pm
Hospitality, Socializing and Silent Auction
Saturday, August 2nd
8:30 am - 9:15 am
Summary of Scientific Session (Q&A)
William Rizzo, M.D. and Ali Fatemi, M.D.
9:15 am - 10:00 am
Emerging Therapies for Leukodystrophies
Gerald Raymond, M.D., Nancy Braverman, M.D., Ph.D., Reuben Matalon, M.D., Ph.D., and Florian Eichler, M.D.
10:00 am - 10:15 pm
Break
Spring 2014
7
10:15 am - 11:00 am
Dietary Treatments for Leukodystrophies
Hong Brereton, M.S., R.D., Lena Bezman, M.D., M.P.H., and Wolfgang Koehler, M.D.
11:00 am - 11;45 am
Psychological Aspects of Leukodystrophies (Q&A)
David Edwin, Ph.D.
11:45 am - 2:15 pm
Lunch, Memorial Service and Live Auction
2:15 pm - 2:45 pm
Living with Genetic Risk of Leukodystrophy: Resources and Options for Families
Leila Jamal, ScM., C.G.C.
2:45 pm - 3:45 pm
General Fundraising
Ben Lenial, ALD/AMN Advocate, Amber Salzman, Ph.D., Steve Tuttle, KKI Development, Dara Schnee, KKI Development and Diane Kane, Esquire, Run for ALD.
3:45 pm
Concluding Remarks and Cruise Information
William Kintner, D.Min, Th.M., ULF President
4:00 pm - 5:15 pm
Exercise Therapy
Landy Askew, P.T., Jen Keller, P.T., Kathleen Zackowski, Ph.D., O.T., and Chris Joseph, Ph.D., O.T.
6:30 pm
Boarding time at Inner Harbor, 561 Light Street - Dinner Cruise of Inner Harbor Baltimore, Spirit Cruises
7:00 pm - 10:00 pm
Dinner cruise with entertainment by Paul Watkins’ Band, The Del-Rays and a Barbershop Octet, The Heart of
Maryland
Sunday, August 3rd
8:00 am - 10:00 am
Informal breakfast and socializing
10:00 am
Meeting of the Board of the Global Foundation for Peroxisomal Disorders (GFPD)
Spring 2014
Family and Individual Registration Form
8
FAMILY REGISTRATION
Joint Summer Conference
July 30 - August 3, 2014
I/we belong to:
ULF
□
ALD Connect
□
Both
□
First & Last Name(s):
Attending Children First & Last Name(s):
Address:
City:
State:
Telephone :(
Zip:
)
E-mail:
Cell Phone: (
)
PLEASE CHECK ALL APPROPRIATE BOXES BELOW FOR MEAL PLANNING PURPOSES:
____ Vegetarian Only
ARRIVAL INFORMATION:
_____ Staying:
_____ Staying:
_____ Staying:
_____ Staying:
_____ Staying:
DINNER INFORMATION
Tuesday July 29, 2014
Wednesday July 30, 2014
Thursday July 31, 2014
Friday August 1, 2014
Saturday August 2, 2014
_____ Dinner:
_____ Dinner:
_____ Dinner:
_____ Dinner:
_____ Dinner:
***Saturday August 2, 2014***
***Saturday night dinner (August 2nd) will be served only on the inner Harbor Cruise.
The cruise cost is included with your registration fee. Please plan to attend.***
Check in at the Embassy Suites is 4:00 pm/check out is 12 noon EST
All Registration forms must be returned to:
ULF
224 N 2nd Street, Suite 2
DeKalb, IL 60115
FAX registration form to: (815) 748-0844
or call (800) 728-5483 - (815) 748-3211
or e-mail: [email protected]
Early bird registration is $250.00 per person on or before June 1st, 2014. Children are no charge
and childcare will be provided at no cost on Friday & Saturday, August 1st and 2nd only, please
advise the ULF office of special needs. All registrations received after June 1st are $350 per person.
All registration fees are non-refundable. Hotel room costs are to be paid directly to the hotel. Registration fees do not include hotel, travel, parking or airport transportation. Hotel reservation and transportation information will be provided upon registration confirmation. Please bring an item for our annual
auction, participation is voluntary and all proceeds benefit the ULF.
All photos may be used by the ULF/ALD Connect unless you write NO here __________.
All registration form must be submitted to the ULF with a check or credit card payable to the ULF.
Early Bird Registration closes June 1st, 2014.
$_______ Registration Fee(s)
___ Check enclosed
___ Charge my
MasterCard
Visa
Amex___Discover
Spring 2014
Professional Registration Form
9
PROFESSIONAL REGISTRATION
Joint Scientific Symposium & Family Meeting
July 30 - August 3, 2014
I belong to:
ULF
First & Last Name(s):
□
ALD Connect
□
Both
□
Organization:
Address:
City:
State:
Telephone :(
Zip:
)
E-mail:
Cell Phone: (
)
PLEASE CHECK ALL APPROPRIATE BOXES BELOW FOR MEAL PLANNING PURPOSES:
______ Vegetarian
ARRIVAL INFORMATION:
_____ Staying:
_____ Staying:
_____ Staying:
_____ Staying:
_____ Staying:
DINNER INFORMATION
Saturday August 2, 2014
_____ Dinner:
_____ Dinner:
_____ Dinner:
_____ Dinner:
_____ Dinner:
***Saturday August 2, 2014***
***Saturday night dinner (August 2nd) will be served only on the Inner Harbor Cruise.
The cruise cost is included with your registration fee. Please plan to attend.***
Check in at the Embassy Suites is 4:00 pm/check out is 12 noon EST
Professional registration is $300.00 per person payable to the ULF. All registration fees are
non-refundable. Hotel room costs are to be paid directly to the hotel. Registration fees do
not include hotel, travel, parking or airport transportation. Hotel reservation and transportation
information will be provided upon registration confirmation. Please bring an item for our annual
auction, participation is voluntary and all proceeds benefit the ULF.
All photos may be used by the ULF/ALD Connect unless you write NO here ________.
All Registration forms must be returned to:
ULF
224 N 2nd Street, Suite 2
DeKalb, IL 60115
$_______ Registration Fee(s)
FAX registration form to: (815) 748-0844
or call (800) 728-5483 - (815) 748-3211
or e-mail: [email protected]
___ Check enclosed
___ Charge my
MasterCard
Visa
Amex___Discover
Card # ___________________________________________
$_______Total
Exp. Date _________ Signature ___________________________
Spring 2014
Memorials
10
IN MEMORY OF…
Alice T. Bird
John & Mary Cain
Reese E. Black
Mrs. Terrile Woodhull
Sharon Boccuzzo
Anne Zepf
Deanna Boyajian
Joseph & Kathy Hardy
Nancy Brachman
Jill Levy
Paula Brazeal
John & Sandra Rossi
Ron Brazeal
John & Sandra Rossi
Austin Wyatt Brown
Harry & Vickey Brown
Terry L. Brown
George W. Brown
The Bryant Family
Al & Frances Romero
Daniel Butler
John & Margaret Butler
Nathan Butler
Ellamae Siebert Foundation
Nicholas Butler
Daniel Lombardo & Karen Banta Charles “CJ” Cammarata
Charles Cammarata, Sr.
Michael & Gloria Caprio
Peter Campagnone
Willie & Diane Dow
Annette Calabrese
Karen L. Johnson
Anna Campagnone
James & Jane Knaus, Jr.
Robert Campagnone
John & Linda Rankin
Anna Campagnone
John & Susan Tibor
Vinny Capozzi
Sarah Tiffany
John Barnum
Sara Elizabeth Bell
Patrick Dieter
Jeff & Laura Bell
Mr. & Mrs. Andrew EiseZenovia Bihun
mann
Oksana Bihun
Andrew Glantz
Lynne Hersche
James Mulroy
Dada Kastaniuk
Patricia Sanker
Irena Kastaniuk
Beth Scott
Roxolana Saciuk
Gary C. Seib
Wolodymyr Siryj
Paul Slifko
Kalyna Snylyk
Ernest Sparages
Jaroslav Sydorenko
Richard Vensel
Helen Tatarko
Jesse White
Fenton Taylor, III
Randall & Kathleen Zakreski
Maria Towstopiat
Billy Carlisle
Jonathan Biles
Linda Harper
Kathleen Laverty
Ramon Abanilla
Ligaya Pollosco
Richard Adler
Marilyn Adler
Holly Adler-Cimesa
Marilyn Adler
Michael Alm
Jeffrey Alm
JD Anderson
Visions by JDR
Richard Anderson
Visions by JDR
Thomas Andre
June McKenny
William Armstrong
Dr. Lora Armstrong
Steven & Fortuna Scheige
Dr. Elloit Sefton-Nash
Jacob Ayers
Cicero & Alice Ayers
Mike & Andrea Ayers
Sheldon & Kathi Hunter-Wolf
Robby Backenson
Bryon & Kathleen Backenson
Charles Bamberger
William & Deborah Cooper
Robert D. Banta
Katie Dosal
Michael Carlisle
Cindy Howard
Linda Harper
Dorothy Feeley
Jessica Carter
Ted & Marge Bierwirth
Jack & Alice Hill
Ralph & Debby Morris Ann Dougherty
Maria Reed
Ian J. Chalmers
Mary Swann
Graham Chalmers
James & Colleen Wallace
Betty Chiapetta
Scott & Cindy Kringen Warren County ADS
Johnny & Mary Padilla Jeanne Fleming
Keith & Martha Yale
Donica Wood
Ben Hillel Fogel
Holly Cimesa
Rena & Alona Fogel
George Cimesa
Jacqueline Foor
Hope Pleyl Coburn
Ellis M. Foor
Grand Junction H.S.
Maxwell Foutch
Homer Coffman, III
Shawn & Meg Foutch
Jack & Linda Sheetz
Katie Fowler
Mark Cole
John & Mary Cain
Clara Cole
Dylan Freeman
Bailey Coppa
Mark & Kathy Klemann
Rodger & Pam Coppa
Ken & Carol Valiquette
Tommy Coxworth
Andrea Billhardt
Ramona Frew
Michael & Donna Dziedzic
Ray Cramner
John & Mary Cain
Clare D. Frew
James Frew
Ryan Criste
Carol Criste
Richard & Liane Gowen
Joseph & Paula Criste
Virginia Jacobs
Dorothy Lavallee
Marie Z. Cross
Betty S. Cross
David & Susan Mulrooney
Peggy Prynoski
Anna Cutsor
James & Marie Cutsor
John & Diane Vayda
Laurie Wisniewski
Ronnie Cutsor
James & Marie Cutsor
Kaitlyn Elizabeth Fryman
Tammy McAllister
Jason D’Agostino
Harvey & Diane Steiner Joseph A. Furman
Gordon & Linda Mosher
Brian Danner
Cheryl Danner
Jonathan P. Gall
Croation Fraternal Union Marie Borg
Evelyn Grechis
Randy Hiltbrand
David & Mary Lou Hardy Debora Noble
Vera Rasmusen
Trevor Gavin
LaVerne & Rose Trickle Kyle & Dana Thomas-Wong
Nellis “Dan” Danner
Geoffrey Gendron
Cheryl Danner
Nina Gendron
Croation Fraternal Union Gregory Gerard
Evelyn Grechis
Donna Arnold
David & Mary Lou Hardy Todd William Gillespie
Vera Rasmusen
Ken & Geraldine Gillespie
LaVerne & Rose Trickle Bret Gilyard
Glen & Chelly Gilyard
Frank DeLeo
Harvey & Diane Steiner
Spring 2014
11
Memorials
Manfred & Penny Klisch
Lauren Glenn
Thomas & Anne Glenn
Terry Kunst
Debra Hilpl
David & Carolyn Lapham
Roger & Linda Little
James Gonzalez
Mike & Jean Gonzalez
Harry Love
Terry & Connie Lynch
Michael Grandazza
Anthony J. Grandazza
Reginald & Rebecca Martin
Peter & Luella Grandazza Robert & Christine Nace
Mr. & Mrs. Walter Stanwick
Jeffery Halter
Karen Kurzhals
Dorothy A. Steele
Thomas & Tera Wenzlick
Danny Ray Harper, Jr.
Linda Harper
Adam Johnson
Rod & Judy Barnes
Christopher Hart
Greg Baer & Clare Hart
Clifford Jules Johnson
Cliff & Susan Johnson
Peter Hart
Mary Helen Johnson
Philip Hart
Andrew Johnston
Nina Stutler
James A. Hedrick, Sr.
Matthew Joiner
Rita F. Hedrick
Paulette Arrington
Chrisopher Henne
Michael Jungwirth
Lynn Henne
Joan Jungwirth
Dan Hoeffner
Craig Karagosian
Steven & Carolyn Korb
Jean Karagosian
Lee Hogendobler
Clint Karlsrud
Charles & Jane Odell
Jacqueline Hearn
Chris & Amy Karlsrud
Samuel Hogendobler
Charles & Jane Odell
Rodolfo & Gloria LeDesma
Jeremy Hoke
Marjorie Joy Katy
Ed & Judi Hoke
Thomas & Anne Glenn
Robyn Holyoke
Shane Keeler
Tom & Carol Holyoke
Donnie & Mickey Mitchell
Tyler Holyoke
Kristy Kintner
Tom & Carol Holyoke
Dr. & Mrs. William Kintner
David Moore
Tyler Scott Horton
Ken & Wendy Horton
Gloria Kitchens
James Connor
Jeannine J. Huffer
Keith & Vicki Busch
Kyle Knight
Edward & Donna Dougherty Stanley & Joan Williams
Sharon Kunz
Richard L. Koloch
Kent & Ellen Plotner
Cliffton Koloch
Raymond & Cindy Varnum Kelli Kovacs
Antonius & Nancy Pupping
James “Jim” Jennings
Eric & Kelley Borodychuk Robbie LaMantia
Carol Bragg
Charles LaMantia
Daniel & Lynette Bragg
David Laplace
Lars & Amy Carlson
Jim & Darlene Cooper
Joseph & Lucinda Clevenger John Laplace
Richard Curtiss
Jim & Darlene Cooper
David & Rosann Ebbinghaus Gary Leland
Casey & Gina Gross
Clara Cole
John & Christine Hafer
Elizabeth Lengerich
Carol Jennings
Michael & Sheryl Gray
Dale & Marcia Klosterman
John & Cynthia Klosterman
Robert & Ronda Klosterman
Mining International, LLC
Gary & Joan Smyth
Kathryn Wagner
Dylan Mercer
Ligaya Pollosco
Peter MacDonald
Myles MacDonald
Meg Shatilla
James Mahan, Jr.
Mary Mahan
Paul Masur
Lynelle Schwedhelm
Kelsey Matt
Peggy Popovich-White
Jay McKinley
Steve & Lisa Perrine
Natalie Meadows
Janine Ciak
Garry Meadows
Edward W. Melick
Phyllis Melick
Mrs. Kent Milburn
Tyler McKenzie Mescon
Jeanne Borfitz
Anthony Milone
Marion & Anne Federici
Carmela Milone
Mario & Anne Federici
Frank Milone
Mario & Anne Federici
Ladd Molin
Alan & Patrice Solyntjes
Jaybird Monroe
Ed & Maribeth Monroe
Jeffery Monroe
Ed & Maribeth Monroe
Caleb J. Moody
Lois Hardy
Heather Morris
Mark Morris
USW Local 309
William K. Morris
Bill Morris
Dr. Hugo Moser
Ralph & Shirley Earle, Jr.
Ep Haven
Sakkubai Naidu, M.D.
Gerald Raymond, M.D.
Kyle Murphy
Karen Murphy
Scott Murphy
Jessica Naugle
Mark & Mary Ann Naugle
Emily Nicklas
Wendy Farber
Brooks Nicklas
Faye Nimmer
John Nimmer
Jack Nimmer
John Nimmer
Carmalita Odom
Mike & Gay Edmonds
Charlotte Porter
Rita Ripple
Steve Ward
Betsy Ogden
Richard & Pam Ogden
Ty Ogden
Richard & Pam Ogden
Julie Orloff
Joel Beck
Stu & Marleen Hacker
Irving & Barbara Orloff
Tommy Pacey
Bob & Barbara Klopke
Kirk Padgett
Bill & Jana Padgett
Trey Padgett
Bill & Jana Padgett
Luka Pelka
Eileen Gallagher
John & Terry Pelka
Robert & Virginia Traynor
Daniel Plaskett
Patricia Borla
Roger & Donna Plaskett
Litchfield Cty BMX Group
Julie Popovich
Peggy Popovich-White
Alexander Priest
Mr. & Mrs. John Bernard
Melissa Dewig
Scott & Brenda Gartner
Wayne & Anita Luigs
Martin Mindrup
Nicholas Priest
Rita Ripple
Evelyn Staples
Rebecca Stoltz
Carolyn Titzer
Sandra Torzewyski
Spring 2014
12
Memorials/Sympathies
Grace Ragon
Karen Simien
Valley View School Dist. Joseph & Anna Simon
Kevin Rauner
Stacey Simien
Yvonne Dahl
Joseph & Anna Simon
Anne Owens
A.J. Slanina
Bob & Yvonne Rauner
Jean Magee
Rose Rauner
Mary Pellegrini
John & Sheila Werner
Joan Slanina
Thomas Reising
Bradley G. Smith
Jim & Carol McGinley
James & Janice Schaffner
Ashley Jordyn Resnick
Cole Smyth
Steve & Kimberly Resnick Gary & Joan Smyth
Brad Allan Reynolds
Will Smyth
Rex & Carole McKee
Gary & Joan Smyth
Elena Routhier
Janet Steelman
Bernard & Joanne Stroshine Ragan Steelman
Dane Sandlian
Karen Steelman
Jay & Holly Bevercombe Ragan Steelman
Amy Scott
Christopher Stewart
Clayton & Julie Murphy
Lynelle Schwedhelm
Donald & Bonnie Stewart
Mariann Sekula
Walter Sekula
Nathan Seth Stockwell, Jr.
Steve & Becky Stockwell
Vanitha Shanmugan
Tasia Bobish
Alyssa Stramel
Julie Beilein
Sara Eden Simmons
David & Carol Simmons Lisa Fox
Sharlene Langford
Lynn Patton
Carlye Sodora
Lester Stepien
Diane Zyskowski
Michael Strathmann
Bill & Maureen Strathmann
Joyce Strock
Terri Scott
Yvonne Swartzlander
James Berger
Allan & Barbara Cohen
Kelly Golding
James McTigue
Meribeth Mermall
Mr. & Mrs. Dan Wassmann
Brandon Testerman
Bill & Helen Testerman
Dane Duncan Tolmie
Dr. & Mrs. John Tolmie
Brian R. Urban
Clarence & Gloria Urban
Carson Vahldick
Carl Vahldick
Kenneth Van Gerwen
Sharon Martinez
Jill Vittorini
Barbara Goll
Isaiah Wallace
Tenny Henderson
Stephanie Wallis
Sarah Ignatius
Karen Morris
Aaron Waser
Betty Waser
Katherine Hope Welch
Grand Junction H.S.
David Whiting
Tom & Clair Sharpless
Megan A. Wilson
Vance & Melinda McGowan
Elliott Wynn
John & Debra Mercier
Robert Wynn
John & Debra Mercier
Suzanne Rene Yamnitz
Larry & Dolores Yamnitz
Albert Zavodnick
Jacquelyn Zavodnick, M.D.
Samuel Zeltser
Aleksandr & Galena Zeltser
Sympathies
Betty Chiappetta: December 19, 2013, loving mother of Peggy Chiappetta and Donna Delgado, Torrance, CA
Raymond Ray Cramner: 85 yrs old, October 8, 2013, loving husband of Bernadine Weaver and loving father of
Steven (Jill) Cramner, Van Buren, OH
Nellis “Dan” Danner: 70 yrs old, November 4, 2013, loving husband of Cheryl (Estes) Danner, Huntley, IL
Dorothy M. Feeley: 85 yrs old, January 6, 2014, loving mother of Maureen Borges, Kathy (Ken) Hubert-McKenna,
John Feeley and Colleen (John) Miller, Berkeley Heights, NJ
Ramona R. Frew: 77 yrs old, February 16, 2014, loving mother of Kathleen (Guy) Prynoski, Susan (Henry) Brogna,
Brenda Frew, Nancy (Mark) Lagrant and Francis Frew, Ware, MA
Jeannine Jackson Huffer: 84 yrs old, January 19, 2014, loving mother of Gregory (Carolyn) Huffer, Lori (Gary)
DeForest, and Lisa (Rick) Sedlak, Belleville, IL
James Lee Jennings: 66 yrs old, January 8, 2014, loving husband of Connie (Cotsman) Jennings and loving father of
Peter (Tonia) Jennings and Lisa (Chad) Borodychuk and loving brother of Vicki Winebarger and Ken (Mary)
McWilliams, Evart, MI
Betty Lengerich: 80 yrs old, loving mother of John (Rebecca) Petkus, James (Roxann) Lengerich, David (Carol)
Lengerich, Joan (Gary) Smyth, Margaret Peg Lengerich and Carol (Chad) Fenske and loving sister of Jean (Don)
Boes, Don Klosterman, Marie Humphries, Tom (Barb) Klosterman, Bernard (Carol) Klosterman, Dale (Marcia) Klosterman, Kay (John) Seibert, Bob (Ronda) Klosterman, John (Cindy) Klosterman, Jerry (Delilah) Klosterman, Dick
Klosterman, Dave Klosterman, Becky (Denny) Link, Chrissie (Howie) Chunnic and Judy (David) Fuller, Saint Marys,
OH
Spring 2014
13
Sympathies/Honors
Edward W. Melick: January 29, 2014, loving son of Phyllis Melick of Kokomo, IN
Carmalita Odom: 72 yrs old, April 29, 2013, loving companion of Jim Pearson and loving mother of William Dale
Odom and Gay (Mike) Edmonds, Crossville, IL
Alexander James Priest: 25 yrs old, June 16, 2013, loving son of Gregg and Rebecca (Jacobs) Priest and loving
brother of Eric (Kim) Priest, Evansville, IN
Tony Matthew Serrato: 32 yrs old, December 1, 2013, loving son of David and Pamela Serrato and loving brother
Steve (Robin), Ryan and David Earl, Long Beach, MS
Yvonne Swartzlander: 82 yrs old, November 2, 2013, loving wife of Harry A. Swartzlander and loving mother of
LuAnn Swartzlander and Harry A. Swartzlander, III, Kent, OH
Stephanie Anne Jillian Wallis: October 5, 2013, loving daughter of Brent and Donna Wallis, and loving sister of
Jeanne, Aurora, CO
IN HONOR OF…
Makai M. Albrecht
Pamela Vele
The Backenson Family
Bryon & Kathleen
Backenson
Peter & Mary Ann
Backenson
Tom & Brooke Backenson
Christopher Michael
Benson
Roxana Habibi
Dawn Marie Bjornsen
Robert & Sandra Bjornsen
Alex Bouley
Bernard Levine
Charna Levine
Gregory Brown
Mary Wheeler
Tory M. Brown
Julie Brown
Sam Buck
Dennis & Rose Dostert
Brianna Burkett
Thomas & Yulinda Cousino
Robert Butler & Family
Olivia Borodychuk
Abalita-Lansing Aylward
Consultants, LLC
Zachary & Kimberly
Aeschliman
Susan Berry
Clay & Elizabeth Bethard
Better Tomorrow Michigan
Fund
Chad & Lisa Borodychuk
Eric & Kelley Borodychuk
Carol Bragg
Daniel & Lynette Bragg
Jonathan & Carrie Braska
Doug & Anne Walker
Barbara Easley
Shelly Bunch
Thomas & Tera Wenzlick Tenny Henderson
Daniel & Susan Campbell Lucas Wey
Alan Fingeroot
Lars & Amy Carlson
Michael & Jennifer Willard Mac & Natalie Fingeroot
Deborah Christensen
Williams Heating &
Joshua Isaiah Flores
Joseph & Lucinda Clevenger Cooling, Inc.
D. Blakely
Alex & Penny Creona
Wings Twenty Two, Inc.
Freda Foard
Dale & Leatha Cudworth
Evan Garfinkle
Harold Childress
Dawn Drossos
Tenny Henderson
M.E. Hurley
Fred Motz Builder, Inc.
Paul Scheff
Benjamin Conley
Patricia Fruehauf
Lawrence Inabnit
William J. Butler School
Bryan Graham
Joanie Connell
Marcie Flores
Donna Skwirut
Casey & Gina Gross
Bill & Deanna Dicks
Melinda Grubich
John Fortin
Olivia Delgado
John & Rosemary
John & Christine Hafer
Bank of America Assoc.
Home Ground, Inc.
Bruce & Linda Bargmann O’Sullivan
Brad James
Camilo Becdach
Arthur Freedman
Connie Jennings
Janis Crowe
Manfred & Penny Klisch
Daniel J. Crowley, D.D.S. Myrna Freedman
Anthony & Linda Kusnier Karen Kato
David & Kristyn Ladd
Ron & Jeanne Kipp
Cody M. Gates
Cody & Tyler Gates
Diane Lantzy
Scott & Cindy Kringen
David & Carolyn Lapham R.A. Lieberman
Dan Gimpert
Ray & Nancy Shuman
Valorie LeFevre
John Matzye
Harry Love
Samuel & Deanne Pittman The Groel Family
Bryon & Kathleen
Stephen & Holly Lowney
Tim & Linda Raciak
Backenson
Terry & Connie Lynch
Michael A Rodriguez
Reginald & Rebecca Martin Skechers Foundation
Elise Hall
Heidi Oelrich
Nathaniel & Jessica Mayes Ronnie & Cheri Smith
Jason & Gretchen McIntyre Lori Tanimura
Debra Hoffman
James Connor
Robert & Christine Nace
Charles & Sylvia Tanori
Nicholas & Julie Anne
YD and KE Inc, Wigs Today Isabella Hreska
Mark Suda
Niederquell
Heather DeWitt
John & Ann Pasquinzo
Marilyn Boersma
Nora Kieffer
Mrs. LaVerne Raimer
Aaron & Mariam Perrault Zane Dial
Gregory & Denise Pratt
Michael & Sandra Dial
Paul Korth
Duane & Kimberly Ostdiek
Steven Rummel
Skyler DiPalma
Brad & Ashley Schafer
Linda Savana
Sean Kulzer
Terry & Sharla Taylor
Ronda Shinaver
Spring 2014
Honors/Benefit Drawing
Neil Kuschnick
Jerome & Nancy Kushnick
Marque Loncon
Barbara Loncon
Ryan MacLean
John & Betty MacLean
Ryan Miller
Alice Kloos
Don & Anna Mae Miller
Latavia Moore
Brooke Borders
Lakeisha Brown
Chick-fil-A/Midland FSU
Ruby Ezell
Eleanora Hobles
Shirley Jones
Donna McCoy
Angela Robinson
Bettye Simmers
Cynthia Wilkes
Ann Moser
Sakkubai Naidu, M.D.
Robert J. Neubauer
Mrs. Donna DeMarco
The O’Keefe Family
Annette Marie Pettineo
Joseph & Marlene Cohen
14
Alan & Elaine Diamond
Arthur & Myrna Freedman
Izzie Freedman
Harvey & Vivian Glassman
Stu & Marleen Hacker
Gary & Judy Jacobson
Abe & Anita Kaufman
Larry & Arlene Newman
Jack & Marian Pachman
Barry Solomon & Carol
Rosenbaum
Irving & Frances Schulman
Steve & Sharon Zion
Danny Perrine & Family
Michael & Leslie Bryson
Rebecca Bryant
Penny Cuddy
Vincent & Ebba Cuddy
Kimberly Cuddy Crawford
Mrs. Terry Fuller
Patricia Heagy
John & Gisella Kelley
Agnes McLaughlin
Josef & Suzanne Ridgway
Javon & Tara Ronel
Alana Cohen & Eric
Sigmund
Joanne Sigmund
Mark & Jen Sigmund
Elizabeth Spudich
Craig Wingard
Kelsey Perry
Linda M. Barrett
Ryan Case
Iain & Shannon Michie
Allison Pizzica
Patricia Sammartino
Roger Plaskett
City of Harwinton, CT
Nicholas Purschke
Dave & Pat Schweissguth
Nadia Raft
Greg Raft & Deirdre Tracey
Max Randell
Jim & Peggy Nyholt
Bob Rauner
Yvonne Dahl
Anne Owens
John & Sheila Werner
Yvonne Rauner
Anne Owens
Brad Rausch
James & Susan Murnane
Christopher & Holly Rausch
Matthew Rausch
James & Susan Murnane
Christopher & Holly Rausch
Judy Richardson
Mike Stepek
Riley Sadusky
Tami Sadusky
Dane Sinnott
Pat & Debbie Sinnott
Lynn Steelman, Jr.
Ragan Steelman
Alexandria Tew
Trina Hall
Susan Repass
Swan Family Foundation
Katherine Tew
Shannan Needleman
Ryan Tong
Patricia Cooper
Tammy Truman
Donald & Kathie Truman
Landen Veneklase
Dr. Melissa K. Fore
Bradley J. Winter
Terry DeLay, Ph.D.
Ryan Yaste
Beatrice Edwards
Hamilton Young
Jacob Price
Carlos Zatz
Paul Zatz
The 2013 Benefit Drawing Winners:
Mary Knapp from New Jersey won a one week stay at Orange Lake Resorts/Disney in Kissimmee, FL
Donna Arnold from Michigan won a one week stay at Christmas Mountain Village in Wisconsin Dells, WI
Gloria LeDesma from Arizona won a queen size quilt handmade by Anita Lewis.
We wish to thank you all for the support you have given the United Leukodystrophy Foundation.
Leukodystrophy is not just a childhood disease and the need for raising awareness continues. Thank you for
joining our fight by raising leukodystrophy awareness within your community.
We look forward to your continued support of our benefit drawing for 2014!
Spring 2014
15
Go Green
Please Help Us “Go Green” and Lower Postage Costs
It has become urgent that the ULF lower overhead expenses, especially postage costs. The best way we can help is
to accept electronic mail from the ULF wherever possible. Please mark the following tear off form and immediately
return to the ULF. It is very important that you keep the ULF UPDATED RE: both E-MAIL AND USPS
MAILING ADDRESSES.
Not only will you will help us save costs by supplying your email address and going electronic, you will also
receive newsletters, updates and important information much quicker than standard mail.
Thank you in advance for updating your information.
----------------------------------------------------------------------------------------------———————————-----------Please send the ULF Newsletter and other communications to me as follows:
_____ via e-mail only
_____ via e-mail and USPS mail
_____ via e-mail and web-site viewing
_____ via USPS mail only
Please communicate with me as follows:
Date ____________________________
Name(s) __________________________________________________________________________________
Address __________________________________________________________________________________
City _____________________________________
State ________________
Telephone (home) _______________________________
Zip _______________
(cell)____________________________________
E-mail ________________________________________
Please return to:
224 N. 2nd Street, Suite 2
DeKalb, IL 60115
Spring 2014
You Are Not Alone
ADDRESS SERVICE REQUESTED
NON-PROFIT ORG
U.S. POSTAGE
PAID
SYCAMORE, IL
Permit No. 4
©
UNITED
LEUKODYSTROPHY
FOUNDATION
DeKalb, IL 60115
Help the ULF save mailing costs in this stressful economy by contacting our office at [email protected]
to receive your newsletter by e-mail.
2014 ULF Annual Conference Auction:
Please bring an item or two with you to Baltimore for our annual auction. New or
like-new items are greatly appreciated. Particularly popular are handmade items or
items unique to your little corner of the world. Participation is voluntary and all
proceeds benefit the ULF and are tax deductable. If you are unable to transport the
item(s) with you or are unable to attend our conference, you may still participate in
our auction and your support will be greatly appreciated by shipping the item(s) to:
The Embassy Suites Inner Harbor, Attention:
Eun Kim, 222 St. Paul Place, Baltimore, MD, 21202
ULF News is published quarterly
by the United Leukodystrophy
Foundation. A subscription is
included in the annual
membership fee of $35 per
individual or family; $70 per
professional or organization.
Deadline for material submission
is the 15th of the month prior to
publication. All correspondence
for the newsletter should be
addressed to:
Please include a note that the item(s) is/are for the United Leukodystrophy
Foundation Annual Auction and if the handmade or if there is any personal history,
please include that in the note. Also please make sure to include your name,
address and contact information so that we may acknowledge your gift.
Thank you so much for your support!
All rights reserved. Readers may reprint
selected articles or portions thereof with
permission and if source is properly cited.
ULF News - Editor
DeKalb, IL 60115
(800) 728-5483 or
FAX: (815) 748-0844
E-MAIL: [email protected]
WEBSITE: www.ulf.org

2014 Spring Newsletter - United Leukodystrophy Foundation

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