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Transcript of The CJD Foundation Newsletter · PDF fileThe CJD Foundation Newsletter ... On May 1st our...
The CJD Foundation Newsletter
341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
President’s Message President’s Message President’s Message
Dear friends, I hope you are all moving in a positive direction especially now that the calen-dar says spring is here (it hasn’t quite arrived yet in NYC). Below are some highlights of our work so far this year: Family Conference We have an amazing speaker list scheduled for our 12th Annual CJD Foundation Family Conference being held, once again, in Washington D.C on July 11-13. The 14th is set aside for Capitol Hill visits. Letters of invitation and registration forms were mailed on March 28th. If you didn’t receive the mailing, you can print out the registration form from our website and send it to us either by email, fax or snail mail. The conference is always a fulfilling and healing event so please try to join us. Rooms are being held at the Wash-ington Court Hotel and reservations must be made separately with them. Capitol Hill visit On May 1st our Medical Director, Dr Pierluigi Gambetti and I visited Capitol Hill where we meet with members of the House and Senate Appropriations Subcommittee to request continuation of funding for the National Prion Disease Pathology Surveillance Center (NPDPSC) for FY 2015. This funding comes from the CDC budget but is again at risk. The budget bill will be addressed by Congress in the next few weeks so this annual visit is carefully timed. As I’m sure all of you know, the difficulty getting anything passed by both the House and Senate has increased, if and when agreements are reached it is nothing short of miraculous, so keeping CJD in the forefront is crucial. Support Groups Our Cleveland and NYC Support Groups are doing well. The Cleveland group meets once a month, the NYC group meets twice a month. If you are interested in joining either group please call our office 212-719-5900.
Continued on page 2
Board of Directors
Florence Kranitz, President
Pierluigi Gambetti, MD,
Medical Director
Mark Goldfarb, Chairman
Mayra Lichter,Vice Chairman
Ruthie George, Treasurer
Marie Kassai, Secretary
Ana Betro, VP Fundraising
Brian Appleby, M.D.
Amanda Baxley Kalinsky
Charles Cash
Tom Haught
Bob Kassai Veronica Oberdorf Paul Paternoster
Scott Paternoster Tom Sawyer Deana Simpson
Mike Vitanza
Stuart Yaffa
Debbie Yobs
Cecile Sardo*
*Deceased
Lori Nusbaum Associate Director Melany Pritchard
Office Manager Wanda Culp-Lias Bookkeeper
INSIDE THIS ISSUE: President’s Message 1, 2
Medical Ed. Update 3
Memory Quilt 3
HelpLine 4
Annual Fund Donors 5 - 8
CJDF Conference 9
Miscellaneous 9
MAY 2014 VOLUME 18 ISSUE 16
2 341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991
[email protected] www.cjdfoundation.org
President’s Message President’s Message President’s Message
**Save the Date** We are very excited to announce our October Benefit Concert!! Please plan to join us for
“Voices of Hope”
Featuring The Young People’s Chorus of New York City
Sunday, October 5, 2014, 4 p.m. – 7 p.m. New York University’s Kimmel Center
60 Washington Square South New York, NY
The event will feature a silent auction, family tributes, informal reception and concert. You will also be able to participate online in the silent auction, tributes, and other activities. Please check our website www.cjdfoundation.org for updated news and information, our virtual Memory Quilt and the Guestbook. I look forward to seeing you at the Conference and the “Voices of Hope” concert. With warmest regards,
President
Florence
3
341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
Medical Education UpdateMedical Education UpdateMedical Education Update
Our first Infection Control Seminar this year was held in Pittsburgh, Pennsylvania. There were
approximately 30 infection control nurses and other professionals in attendance, and all were very
engaged in the presentation. That same evening we held a Family Workshop and had 17 family
members join us. Deana Simpson, RN and CJD Foundation Board Member, led both of these
sessions which were very well-received.
In April, Dr. Beau Ances, Neurologist at the Washington University School of Medicine, and Deana
Simpson, led both an Infection Control Seminar and a Medical Grand Round Meeting. With the help
of Dr. Michael Fischer, Epidemiologist/Coordinator for Creutzfeldt-Jakob Disease and other Human
Prion Diseases for the Texas Department of State Health Services, there were a total of approxi-
mately 150 professionals in attendance. Thank you, Dr. Fischer! That night we held a Family
Workshop with 14 family members in attendance.
It has been wonderful meeting so many of you. We are so pleased at the success of our Education
Programs. More workshops, infection control seminars, and medical grand rounds are being
planned. I will keep you all informed through email, Facebook and twitter.
Happy Spring!
LoriLoriLori
Memory QuiltMemory QuiltMemory Quilt
With your donation of $100 we will create a “square” in memory or in honor of your
loved one where you can place either a photograph or a star along with a tribute of
10-100 words. When you click the "submit" button, you will be taken to a special
donations page and be asked to provide information. Your Memory Quilt entry will
be sent to the CJD Foundation's webmaster for approval and posting, and once your
memorial has been added you will be notified by email. When a CJD Memory Quilt
"square" is created or a tribute is added to a square, a notification will be sent. If
appropriate, an acknowledgment will also be sent to the family member listed on
the donation form. Please consider establishing a CJD Memory Quilt square as a
unique tribute. If you have any questions or need help accessing the Memory Quilt,
just call our office at 1-800-659-1991.
4
HelpLine HelpLine HelpLine
The CJD Foundation’s largest ongoing project is our toll-free HelpLine. (1-800-659-1991 or
[email protected]). The HelpLine is available to families coping with a loved one’s suspected CJD
diagnosis and are in need of support and information. We also receive many calls from medical professionals,
funeral directors and embalmers, the general public, and the press and the media. We retrieve HelpLine
messages seven days a week, and if the call is in reference to a patient in crisis, we return calls up until
10:30pm. The HelpLine statistics January 2014 through April 30, 2014 are below:
The CJD Foundation is not a reporting agency and families are not required to report their loved one’s illness or death
to us. These statistics are not intended to be scientific in nature, but instead to help validate the work we do on a daily
basis.
Note 1: Not all new cases and deaths reported are confirmed by autopsy.
Note 2: Total HelpLine contacts include phone calls and emails from families, medical professionals and others.
*: Through April 30, 2014
341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
2014
MONTH NEW CASES
REPORTED DEATHS
REPORTED TOTAL HL
CONTACTS
UNIQUE
WEBSITE
VISITORS
January 17 6 144 3,211
February 13 6 148 3,838
March 10 7 170 2,557
April 15 3 127 2,972
TOTALS 55 22 589 9,606
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341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected]
Annual Fund Donors Annual Fund Donors Annual Fund Donors
The CJD Foundation’s Annual Fund Campaign has received over $55,000 to date. Thank you to the following
donors for their generous contributions.
Ms. Maude Abkarian
Ms. Irene Adler
Ms. Kirsten Albers
Mr. Michael R Ament
Ms. Kathy Anderson
Mrs. Candice Aycock
Ms. Bruna Bacchetti
Mrs. Karen Bach
Mr. Daniel Bailey
Mr. and Mrs. Patrick Bailey
Mr. and Mrs. Mark Baker
Mrs. Carolyn C Batten
Mr. and Mrs. John Baumann
Mrs. Bonita Beard
Ms. Georgia Beebe
Ms. Wilma Benko
Ms. Nanette Beno
Mr. Marty Berg
Ms. Debora Berger
Ms. Sula Bernstein
Drs. Jim Bershon
Mr. and Mrs. Bob Betz
Mr. and Mrs. Milton Bickle
Mr. and Mrs. Richard Bitzer
Mr. and Mrs. Kurt Black
Mr. and Mrs. Peter Bloch
Mr. and Mrs. Jack Bonner
Mr. and Mrs. Steven Borodovsky
Mr. Steve M Botnick
Mr. and Mrs. John Braddock
Mr. and Mrs. Larry Breeden
Ms. Priscilla Bromley
Ms. Karen Brooks
Brian and Anita Brown
Ms. Judith Brown
Mrs. Sue Brunnabend
Mr. and Mrs. Scott Bucci
Mr. and Mrs. George Burns
Ms. Betty Burri
Mr. Ronald Burrichter
Mr. and Mrs. Arthur Caggiano
Mr. Robert Cahalan
Mrs. Bonnie Callahan
Mr. and Mrs. Robert Canvasser
Mrs. Sharon Canzano
Ms. Catharine Carlson
Ms. Martha Carucci
Ms. Kellee A Casebeer
Mrs. Carolann Catalogne
Ms. Dianne Champion, RN, MPH
Kris and Dan Charny
Mrs. Mary Chiappetta
Mrs. Lorraine Ciero
Mr. and Mrs. Lewis Clay
Ms. Katherine D Codanti
Mr. and Mrs. Steve Coden
Ms. Florence Cole
Mr. and Mrs. Stephen Cole
Dr. and Mrs. Domenic Coletta
Mr. Stephen Comunale
Ms. Mary Contadino
Mr. and Mrs. Michael Conti
Ms. Barbara J Costello
Ms. Catherine Costello
Mr. and Mrs. Thomas Costigan
Mr. and Mrs. Jake Cottrell
Mrs. Bette Cox
Mr. Cliff Coxbill
Wendy and David Cram
Mr. and Mrs. Paul Crockett
Ms. Sandra Crowley
Mr. and Mrs. Ronald Cuenin
Ms. Janet Daveiro
Ms. Patricia Davidson
Mr. and Mrs. Andy Davis
Mr. John Davis
Mr. Scott J Davis
Mr. and Mrs. Pierre DeFelice
Mrs. Doris DeVol
Ms. Marian DeWitt
Mrs. Melody Dean
Mr. and Mrs. Bill Degnan
Mr. and Mrs. Stan Dennis
Mr. and Mrs. William Depierro
Ms. Diane M Dermody
Rev. and Mrs. John Desaulniers
Mrs. Erin Dillett
Jack and Ida Lynn Dodd
Mr. and Mrs. Thomas Donahue
Mr. and Mrs. Dave Dougherty
Ms. Diane Dowd
Mr. Murray Drisko
Mrs. Betty A Drymon
Ms. Martha Dufresne
Ms. Marilyn E
Dr. and Mrs. Fred Edinger
Mr. Timothy S Ehrlich
Mrs. Francie Einenkel
Ms. Christine Ellis
Mr. David L Embree, Sr.
Mr. Peter Faber
Mrs. Lisa Fairbanks
Mr. and Mrs. Lionel Fallows
Mr. and Mrs. Michael J Feeney
Mr. and Mrs. Robert Fein
Ms. Joyce Feldman
Mr. and Mrs. Frederick Fellendorf
Mr. and Mrs. Steven Felton
Mr. Nicholas Fermano
Mr. John Figler
Mrs. Matilda Fink
Mrs. Janice Fisher
Mr. and Mrs. Joel Fleisher
Mr. and Mrs. David Floren
Mr. and Mrs. Tom Flynn
Mr. Steven Fogel and Dr. Joan Lister
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341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
Annual Fund Donors Annual Fund Donors Annual Fund Donors
Mr. and Mrs. Dennis Ford
Mrs. Michelle Fornoff
Mark and Janice Franzen
Fraternal Order of Eagles
Dr. Robert W Fredrickson, M.D.
Mrs. Elizabeth Frey
Ms. Donna M Fugo-Kumler
Mr. Richard Funk
Dr. and Mrs. Dennis Furlong
Ms. Gisela Gardner
Ms. Katie M Gawerecki
Mrs. Linda Gazire
Ms. Wendy Geiwitz
Mr. and Mrs. Gabor Gellert
Mrs. Miriam Gemson
Mr. and Mrs. Nicholas George
Ms. Sharon Gerber
Mr. Glenn Gibbs
Ms. Carnen Girves
Ms. Susan Gisser
Mr. and Mrs. Greg Juell
Mr. and Mrs. Edgar Glassman
Mr. and Mrs. Lee Gochnour
Mr. and Mrs. Doug Gogal
Mr. and Mrs. Steve Goldman
Mr. and Mrs. Michael Gomer
Mrs. Eileen Graves
Ms. Susan Green
Ms. Carolyn R Greenberg
Mr. Stanley Greenberg
Ms. Barbara Greene
Mr. and Mrs. Scott Gross
Mr. and Mrs. David Grundy
Mrs. Sheila Guin Ms. Phyllis Gustavson and Mr. Joe
Skaggs
Ms. Helga Hallgrims
Mrs. Shirley Handwerger
Mr. and Mrs. Jim Hannah
Mrs. Jodi Hansen
Mr. Centhy Hansford
Dr. Theresa Harrington
Ms. Mary A Harris
Ms. Michelle Hartman
Mr. and Mrs. John Hebert
Mr. and Mrs. Lee Heikkinen
Mr. Howard R. Hill, Jr.
Mr. and Mrs. Kenneth F Hill
Mrs. Jennifer Hill
Mrs. Elizabeth Hoagey
Ms. Judy Hoffman
Ms. Clare Hofmann
Ms. Robin Honig
Ms. Victoria Howell
Ms. Wanda Howell
Mr. and Mrs. Richard Hubbard
Mrs. Sheila Hudson
Mr. and Mrs. William Hulett
Ms. Linda Iuele
Ms. Rita Iwakawa
Dr. and Mrs. Thomas Jackson
Mr. Barry Johnson
Mr. Scott Johnson
Mr. Robert Johnston
Ms. Theresa Jones
Mr. Eric Jubin
Mr. Mitchel Kamman
Mr. and Mrs. Thomas Kauffman
Ms. Anne Kelley
Mrs. Jane Kelley
Ms. Jennifer Kenning
Mr. and Mrs. Marcos Kerbel
Ms. Miriam Kerr
Mr. John Keyser
BK Transportation
Daniel and Margery Kirst
Ms. Katrina Kline
Dr. and Mrs. Eric Kodish
Mr. and Mrs. Joseph Kodish
Mr. and Mrs. Darren Koehler
Mr. Elmer Koenig
Mr. and Mrs. Michael Kosarowich
Mickey and Karen Kurzman
Paul and Greg Lymber
Ms. Betty Larosa Laureate Theta Rho of Beta Sigma
Phi
Jim and Marilyn Lawless
Mrs. Maureen Lee
Mrs. Victoria Leone
Mr. Edward M Levin
Mr. and Mrs. Martin Levin
Mr. and Mrs. David Lichter
Mr. Kenneth Lining
Mr. and Mrs. Gerald Livreri
Dr. Gary Loewenberg
Ms. Patricia Logan
Ms. Sheldra Lourie
Ms. Sandra Lucas
Ms. Janice E Madouros
Mr. Don Marrs
Mr. and Mrs. Louis Martin
Ms. Mary Ann Martin
Mrs. Delores Maslin
Ms. Rachel Mathewson
Mrs. Wendy Matthews
Mr. and Mrs. James Maxen
Mrs. Sharon McCallister
Mr. Tom McCool
Ms. Betty McFarland
Mr. Otis McWhorter
Ms. Aimee Miller
Ms. Nancy L Miller
Mr. Robert Milner
Mr. and Mrs. Gordon Minyard
Ms. Doris Mitchell
Mr. Lee E Mitchell
Mr. and Mrs. John Mogen
Mr. and Mrs. Richard Molenaar
Ms. Patricia Moody
Ms. Carolyn C Moore
Mr. and Mrs. Raymond Moore
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341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
Annual Fund Donors Annual Fund Donors Annual Fund Donors
Mr. and Mrs. John Moran
Mr. and Mrs. Richard Mori
Mr. and Mrs. James Morton
Mr. Kirk Morton
Mr. Jack Firestone
Ms. Nilda Mulas and family
Ms. Kathleen Mulhern
Mr. and Mrs. Gerald Murphy
Mrs. Jacqualine F Murray
Mr. Mark Myers
Ms. Beverly Nathan
Mr. and Mrs. Donald Neal
Mr. and Mrs. Nels Nelson
Mr. and Mrs. Stephen Nemergut
Ms. Paula Nichols
Mr. and Mrs. Daniel Nickloy
Mr. Gregory Noble
Ms. Helen Noorthoek
Ms. Dorothy Norman
Mr. and Mrs. Thomas O'Connor
Ms. Diane O'Rourke
Ms. Ellen Ogren
Ms. Marie Ortega
Mr. and Mrs. James Owen
Mr. and Mrs. Eric Paljug
Mr. and Mrs. John Paljug
Ms. Amy Palmer and Mr. Andrew Davis
Mr. and Mrs. Darryl Parker
MaryAnn Shamis
Mr. Jules Peemoeller
Mr. and Mrs. Donald Persinger
Mr. and Mrs. Darrell Petroff
Ms. Sariah Pinick
Mr. and Mrs. Edwin Pinkham
Ms. Christine Piovesan
Mr. Joel Podbere
Ms. Joan E Polhamus
Mr. and Mrs. Dale Pope
Mrs. Patricia C Pope
Mr. and Mrs. Christopher Popoloski
Mrs. Barbara Posner
Mr. and Mrs. Walter Primus
Mr. and Mrs. Bob Prince
Ms. Eleanor Proctor
Mr. Robert F Prokop, Jr.
Mr. and Mrs. Daniel Pukach
Ms. Gia Randall
Mrs. Teresa Ratekin
Mrs. Patricia Ratterree
Mr. and Mrs. Gene Raulston
Mr. and Mrs. Ralph Ravenscraft
Mrs. Mary Ellen Rawlinitis
Mrs. Martha Kelley Rees
Ms. Sherill Rego
Mrs. Carol Reil
Mr. Ihor Remsky
Mr. Karl Reuther and Dr. Gayle Galan
Ms. Julie Rice
Mr. Duane Richards
Ms. Harriet Richman
Mr. Clifford Richner
Mr. and Mrs. Stuart Richner
Mr. Zachary Richner
Mrs. JoAnn C Riddle
Ms. Patricia Ripaldi
Mrs. Pamela Risch
Ms. Rosemary Roach
Mr. and Mrs. Charles Robbins
Ms. Nancy Robbins Hancock
Mr. and Mrs. Elliott Robinson
Ms. Irene Rockwell
Mrs. Mary E Rollins
Mrs. Susan S Rorer-Whitby
Mr. and Mrs. Gary Rosen
Mr. and Mrs. Chuck Rosenblatt
Mrs. Regine Rosenfelder
Mrs. Stacy Rossi
Ms. Terry Roznik
Mr. Richard Ruark
Mr. and Mrs. Eric Rubin
Mrs. Wanda Rule
Mr. and Mrs. Fred Rullo
Mr. and Mrs. Bart Ryckbosch
Ms. Deborah Sabin, Esq.
Mrs. Marianne Sabrier
Ms. Kerry Sack
Mr. and Mrs. Bradley M Sacks
Ms. Theresa Sandello
Ms. Dhanmatie Sankarsingh
Mr. and Mrs. Phillip Santoya
Mr. Robert Sarsfield
Ms. Sheila Schaffir
Ms. Carolyn A Scherman
Mr. and Mrs. John Schneider
Ms. Debra Schroeder
Mr. and Mrs. Glen Schuster
Mr. and Mrs. Steve Schwan
Mr. and Mrs. Gregg Scott
Mr. and Mrs. John Seeley
Mr. Joseph Semon
Mr. and Mrs. Gary Shamis
Mr. and Mrs. Harry Shapiro
Mr. and Mrs. Steve Shechter
Mrs. Colleen Silverman
Mr. and Mrs. Alex Simon
Mr. and Mrs. Jeffrey Simpson
Ms. Christine Sirica
Ms. Susan L Skinner
Mr. and Mrs. Tom Skrable
Mrs. Julie C Small
Mrs. Ethel Smith
Ms. Gena Smith
Ms. Margery Sneddon
Ms. Jeannie Sokol-Hill
Mr. and Mrs. Michael Solomon
Mr. and Mrs. Daniel Soufer
Ms. Perry Spies
Mrs. Linda Spitalsky
Mrs. Deborah Spotts
Ms. Layne D Staral
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341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
Annual Fund Donors Annual Fund Donors Annual Fund Donors
Ms. Henrietta Stawitz
Mrs. Merna W Stern
Mr. and Mrs. Jeffrey Stewart
Mr. Scott Stewart
Ms. Joan Stock
Mrs. Terry Stoltz
Mr. and Mrs. Todd Stoltz
Mr. Laurence Stone, DDS
Dr. and Mrs. Robert T Stone
Mr. and Mrs. Joseph Storer
Ms. Amy Sturmer
Mr. Stanley Swan
Ms. Martha Swartz
Mrs. Joann Sykes
Mr. Curtis M Sylvester
Mr. Anthony Szafranski
Mr. Alan Tanz
Ms. Beth Teibel
Mr. and Mrs. Michael Terasconi
Allan and Judith Thompson
Ms. Karla Thompson
Ms. Joan Timbang
Mr. and Mrs. Christopher Toci
Ms. Estella Townsend
Ms. Giovanna Traugott
Mr. Joseph Tringali
Mr. and Mrs. Roger Trudel
Mrs. Valerie Ungren
Dr. Norma Vaglio-Laurin
Mr. and Mrs. Don Vandenberg
Mr. Normand Verrier
Mrs. Nancy Vondette
Ms. Beulah T Walker
Ms. Nancy P Walker
Ms. Jackie Wallace
Mr. and Mrs. Francis Waller
Ms. Phyllis Weaver
Mr. and Mrs. Jonathan Webb
Ms. Catherine Weissman
Ms. Sarah Werntz
Mrs. Bernadine P Whitaker
Mrs. Tracey White
Mr. and Mrs. William White
Dr. Patricia Wickwire
Mr. and Mrs. Thomas Wilson
Mr. and Mrs. William Wilson
Mr. and Mrs. Milton Wiskind
Ms. Betty Witherel
Mrs. Diana Wohler
Ms. Bonnie L Wojno
Ms. Leslie Wong
Michael and Leanne Woodall
Mark and Tanda Woods
Mr. and Mrs. Jack Yaffa
Mrs. Debbie Yobs
Ms. Debbie Zammit
Mr. and Mrs. Burt Zeiger
Mr. and Mrs. Sidney Zetzer
Mr. and Mrs. Max von Dahlen
9
Save The DateSave The DateSave The Date
RemindersRemindersReminders
Don’t forget to use this link every time you shop online. A percentage of each purchase goes to
The CJD Foundation. A few of the many retailers are: Target, Amazon, Walmart, Home Depot,
Expedia, Staples). There is no extra cost to our supporters.
http://www.givebackamerica.com/charity.php?b=1018
We have over 2,200 “likes” on our facebook page! Please log on to
www.facebook.com and search for “CJD Foundation” to find us.
We are now on twitter! Follow us @CJDFoundation
341 W. 38th Street, New York, NY 212.719.5900 HelpLine 1.800.659.1991 [email protected] www.cjdfoundation.org
IIIf you have any comments or suggestions for this newsletter, please email us at [email protected].
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If you are not on our email list and would like to receive our newsletter, please email
[email protected]. Type “NEWSLETTER” in the subject line and include your first and last name in the body of the email. Please also include your mailing address for other CJD Foundation updates, including conference information and invitation, and your loved one’s name who has been affected by CJD. Your information is confidential and never shared with any 3rd parties.
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CJD 2014 and the 12th Annual CJD Foundation Family Conference
Washington Court Hotel
Washington, DC July 11 -14, 2014