The CJD Foundation Newsletter · PDF fileThe CJD Foundation Newsletter ... On May 1st our Medical Director, Dr Pierluigi Gambetti and I visited Capitol ... Ms. Sandra Crowley

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

mailto:[email protected]

http://www.cjdfoundation.org/

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



http://www.cjdfoundation.org

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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


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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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



7



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



8



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


IIIf you have any comments or suggestions for this newsletter, please email us at [email protected].

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[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.

Comments/SuggestionsComments/SuggestionsComments/Suggestions

CJD 2014 and the 12th Annual CJD Foundation Family Conference

Washington Court Hotel

Washington, DC July 11 -14, 2014

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Documents

The CJD Foundation Newsletter · PDF fileThe CJD Foundation Newsletter ... On May 1st our Medical Director, Dr Pierluigi Gambetti and I visited Capitol ... Ms. Sandra Crowley