Gaucher Community News - National Gaucher Foundation

Gaucher Community News 

Summer, 2006 Issue 

Founded by Rubin Bakin 

Published by the National Gaucher Foundation 

Born with Gaucher disease, Ted Meyer uses his art for expression 

and benefits others through his work 

Ted Meyer’s work is, on one hand, an expression of someone 

exiled from his body, and on the other, the cry of a soul 

entrapped. Through stylized characters and images, Ted is 

using his skills as a painter and illustrator to make art that 

plays with dichotomies—of self and of life, health and 

sickness—and he often makes light of it all. 

Ted has been painting since 1987 when a friend gave him 

some paint for Christmas and said,“You keep saying you are 

an artist, now paint!” Seven months later he sold out his 

first exhibit. 

Ted’s work, though always humorous, displayed a level of 

discomfort with the human body. Like many skilled artists 

throughout history (Chaim Soutine and Francis Bacon easily 

come to mind),Ted was skilled at drawing realistic forms, but 

he painted “unlovable” figures. 

Ted was born with Gaucher’s disease, a rare genetic disorder 

that causes pain and deterioration of the joints and organs. 

He spent many days as a patient in a variety of New York 

hospitals. It was during his repeated stays at a local hospital 

in New Rochelle that Ted first experienced a convergence of 

art and medicine. Daily visits by the “Art Lady” with her cart 

of pipe cleaners, crayons and leftover medical supplies 

pushed Ted to create art about being in the hospital. The 

experience set a tone for his life’s vision. Art and medicine 

could be paired, and being hospitalized could be portrayed 

as a normal occurrence. 

As his images developed they became more “Ted-centric,” 

featuring contorted but highly-designed human skeletons 

that appeared as recurring motifs. His “Structural 

Abnormalities” series was initially created in the months 

before his first round of hip replacements. Ted describes 

himself at that stage as being “. ..atwarwith my body. My 

condition was so rare there was no one to talk about it 

with, and I was having a hard time dealing with all the 

medical options and possible complications.” 

Searching for Glow Pigs 

1987 

(Oil on Canvas 4’x4’ 

Ted in hospital pre-splenectomy 

1962 

Bilateral Hip Replacement 2003

Who’s Who On NGF’s Medical 

Advisory Board 

Spotlighting Dr. Greg Grabowski is part of an ongoing 

tribute we are paying to the National 

Gaucher Foundation’s Medical Advisory Board. 

Gregory Grabowski, M.D., PhD 

Children’s Hospital Medical Center and University 

of Cincinnati, College of Medicine, Division of 

Human Genetics 

Cincinnati, OH 

Www.cincinnatichildrens.org 

Tribute to 

Gregory Grabowski, M.D., Ph.D 

A Professor of Pediatrics and Molecular 

Genetics, Biochemistry and Microbiology, 

Gregory Grabowski, M.D., has spent a lifetime 

studying genetic diseases, with an emphasis on 

identifying, treating, and curing various 

disorders, including Gaucher disease. His 

research on Gaucher disease is extensive, 

covering nearly all genetic aspects of the 

disease. Dr. Grabowski's other related research 

interests contain the study of the basic 

mechanisms of lysosomal diseases, enzyme 

therapy in genetic diseases, bone marrow 

transplantation and gene therapy for Gaucher 

disease, predictive genotyping, and weighing 

the moral situations in Gaucher's various 

treatment options. 

Dr. Grabowski is presently the Director of 

Human Genetics at the Children's Hospital 

Research Foundation in Cincinnati, Ohio, and 

the A. Graeme Mitchell Chair of Human 

Genetics. He is also a professor of Pediatrics, 

and Microbiology and Biochemistry, at the 

University of Cincinnati College of Medicine. 

A graduate of the University of Minnesota, 

Dr. Grabowski has a long and distinguished 

educational background. He did his doctoral 

work at his alma mater, and embarked on his 

residency in 1974 in the University of 

Minnesota Department of Pediatrics. 

Continuing his career at Minnesota, he 

became a Fellow in Medical Genetics and an 

Instructor at the University's Department of 

Pediatrics. In 1979, Gregory left for New 

York, and established his research and clinical 

career at the Mount Sinai School of Medicine. 

He left New York in 1992 for Cincinnati, 

where he works today. 

He is an avid writer, and has produced >230 

medical publications. The works are varied, 

ranging from textbooks of pediatric 

nephrology to Gaucher Disease: A Century of 

Delineation and Research, and scholarly 

research results. He is a regular reviewer of 

ten different medical journals, including the 

Journal of Clinical Investigation and the 

American Journal of Human Genetics. Dr. 

Grabowski also serves as an associate editor 

of Molecular Genetics and Metabolism. 

Furthermore, he assists on twelve advisory 

boards, including the Gaucher Disease 

Technology Assessment Conference Planning 

Board and the National Tay-Sachs and Allied 

Diseases Association. He was Chairperson of 

the Project Hope/Genzyme Gaucher Initiative 

Expert Committee from its founding in 1999 

until 2006. 

Dr. Grabowski's recognition in the medical 

community is widespread. He is the recipient 

of NIH Awards in Individual Fellowship and 

Research Career Development.

In addition, the National Gaucher Foundation 

bestowed him with the Excellence in Research in 

Gaucher Disease Award. In 2005 he was elected to 

the Association of American Physicans. 

Dr. Grabowski serves as a member of several Ohio 

State and National Committees including the Ohio 

Governor's Taskforce for Birth Defect Information 

Systems, the Governor's Taskforce for use of 

genetic information in Insurance determinations, 

and has been the President of the Society for Inborn 

Metabolic Diseases. 

Dr. Grabowski is one of the foremost world-wide 

authorities on Gaucher disease, with an established 

track record for success at the University of 

Cincinnati. 

In addition to being a member of the National 

Gaucher Foundation Medical Board, Dr. Grabowski 

is a member of the Scientific Advisory Board for 

the Children's Gaucher Research Fund. 

Dr. Grabowski ICGG Coordinator 

for Gaucher Registry 

Scientific direction is provided to the Gaucher 

Registry by an independent group of physicians, the 

International Collaborative Gaucher Group (ICGG) 

Coordinators, who have extensive experience in 

managing patients with Gaucher disease. These 

physicians serve as primary liaisons between the 

Gaucher community and the Registry in their 

geographic regions. Some of the activities in which 

the ICGG Coordinators are involved include: 

* Developing recommendations for monitoring 

Gaucher disease patients 

* Reviewing Gaucher Registry Clinical Summary 

Reports and publications on Gaucher disease 

* Implementing subregistries to address specific 

unanswered clinical questions related to Gaucher 

disease 

* Consulting with other physicians and health 

care providers on the management of Gaucher 

patients 

Online Discussion Group 

Join Today! 

In 1994, Wayne Rosenfield started an online 

discussion group for people who have Gaucher 

Disease or other rare inherited metabolic diseases. 

The discussion group was moved to Yahoo groups 

last year and has well over two hundred subscribers 

throughout the world. It includes people with 

Gaucher Disease, family members, doctors, nurses, 

researchers and others interested in Gaucher Disease 

or other inherited metabolic disorders. It's accessible 

twenty-four hours a day and it is independent of any 

entity’s control. 

Join In on A Live Meeting Through 

The Latest In 

Technology.....WebEx! 

The National Gaucher Foundation has made it 

possible for anyone with a computer to be able 

to attend WebEx meetings. 

Through the many miracles of technology, 

WebEx allows anyone to view, listen and 

participate in meetings, conferences and 

seminars, without leaving the comfort of their 

home or office. 

If a meeting is being held in New York, you can 

participate in the meeting from wherever you 

are. Go to our website at 

www.gaucherdisease.org or check the list serve 

to see what meetings will be held as WebEx 

meetings. This information will also be 

included in the meeting invitations, which are 

sent out by the National Gaucher Foundation. 

Prior to each WebEx meeting, the listserve, 

website and invitations will advise you of a 

phone number and pass code which you will 

need to join the meeting. You will also be 

given instructions on what to do to log on, or 

any computer set-up required. 

We hope you will all enjoy the opportunity to 

participate in these meetings which would not, 

in the past, have been possible for you to attend.

An Emerging New Treatment for Type 1 

Gaucher Disease: Results of a 9-Month 

Phase I/II study 

By Prof. Ari Zimran 

Director of theaucher Clinic at Shaare Zedek 

Medical Center in Jerusalem, Israel In the GA-GCB trial, there were 

significant increases in hemoglobin (on 

average: 2.24g/dL; mean increase of 

Shire Human Genetic Therapies, Inc. (Shire HGT) 

has recently completed a 9-month Phase I/II trial 

with Gene-Activated® human 

glucocerebrosidase (GA-GCB), an investigational 

new product, at the Gaucher Clinic at Shaare 

Zedek Medical Center. GA-GCB is human 

glucocerebrosidase which is produced in a wellcharacterized, 

continuous human cell line using 

proprietary Gene-Activated® technology. Unlike 

Cerezyme®, GA-GCB has an identical amino acid 

sequence to the naturally occurring human 

enzyme, which may be an advantage. This 

innovative technology has been used to develop 

an alternative enzyme replacement therapeutic 

option for patients with Gaucher disease. 

19.2% from baseline) and in platelet 

3 

counts (on average: 40,600/mm ; mean 

increase of 67.6% from baseline) and 

also significant decreases in spleen and 

liver volume (by 49.5% and 18.2% from 

baseline, respectively). 

Similarly, there were significant 

decreases in the biomarkers 

chitotriosidase (by 74.2%) and CCL18 

(by 57.1%). Improvements in some 

parameters were apparent as early as 

three months after the start of the 

therapy. 

The purpose of the Phase I/II study was to assess 

the safety and efficacy of GA-GCB in adult 

patients with type 1 Gaucher disease. Twelve 

patients received GA-GCB every other week for 9 

months. Of 12 patients treated, 11 patients 

completed the study. There were no drug-related 

serious adverse events and no patient 

discontinued participation because of adverse 

events. Infusion-related reactions were limited, 

mild and transient. None of the treated patients 

developed anti-GA-GCB antibodies. 

These results suggest that Gene- 

Activated® human glucocerebrosidase 

(GA-GCB), which has an identical amino 

acid sequence to the naturally occurring 

human enzyme, holds promise as a new 

enzyme replacement therapy for 

Gaucher disease and warrants further 

evaluation in clinical studies in a broader 

population of patients. Phase III studies 

with GA-GCB will begin late 2006. 

The results with GA-GCB were very impressive. 

Notably, the GA-GCB study did not allow children 

to enroll, who typically respond better to 

treatment, yet similar results were obtained to 

the seminal trial of Ceredase®, where 8 out of 12 

patients were younger than 18 years of age.

Scheduled Events for September 2006 National Gaucher Awareness Month 

Listed on the next few pages, events and meetings supporting 

Gaucher Awareness Month are listed. If you are interested in further 

information, 

01 September 

Gaucher On Line Awareness Auction 

For more information about the auction: 

http://www.cmarket.com/catalog/landingPage 

.do?vhost=gaucherdisease 

Cyndi Frank 

(877) 649-2742 

Cyndi@gaucherdisease.org 

Online 8:00 am 

Sept. 1st thru Sept. 30th 

Gaucher Disease 24 hr Delithon 

Eat and enjoy the meeting 

An ongoing Gaucher awareness initiative 

sponsored by the 

Jewish-Associated Disease Action Committee 

(JADAC) 

Www.24hourdelithon.com 

Mike Margolis 

(818) 521-5383 

Mgm@studiocitynow.com 

07 - September 

NGF Educational Meeting 

Maggiano's Restaurant 

#2 The Boulevard St. Louis 

Richmond Heights, MO 

314-824-2410 

6:30 to 8:30 pm 

Warren McCollom, Featured Speaker 

Malick Shah, MD and 

Alison Whalen, MD, Moderators 

12 September 

“September Summit” 

National Gaucher Disease 

Awareness Month 

Kick-off program hosted by the NGF 

www.gaucherdisease.org 

Contact: Gena Henderson 

(617) 937-2584 

ghenderson@mslpr.com 

The Jewish Community Center 

334 Amsterdam Avenue (76th Street) 

New York, NY 

10 AM to noon 

Speakers: Rhonda Buyers-NGF 

Suzanne Krupskas and Andrea Trombino 

Dr. Edwin Kolodny and Dr. Pramod Mistry 

13 September 

Know Your Heritage 

A Single Gene Can Make A Difference 

An educational awareness program discussing 

Gaucher disease 

St. Paul Jewish Community Center 

1375 St Paul Avenue, St. Paul, MN 

Contact: Anna Marie Piccolo, Wellness Director, 

St. Paul JCC 

(651)255-4764 

7:00 to 9:00 pm 

Speakers: Stacey Feuer, 

Chester Whitley, MD, and Karen O'Neill, RN

Scheduled Events for September 2006 National Gaucher Awareness Month 

12 September 


Maggiano's Restaurant 

2685 Southdale Center 

Edina, MN 

952-285-4339 

6:30 to 8:30 pm 

Staci Feuer, Featured Speaker 

Chester Whitley, MD, Moderator 

17 September 

“Our Heritage and Our Health” 

Hosted by: Jewish Genealogical Society 

Temple Adat Elohim 

2420 E. Hillcrest Drive 

Thousand Oaks, CA 

1:30 to 4 pm 

Gary Frohlich - CGC, Speaker 

“To Life Festival ” 

A Jewish Cultural Street Festival 

Stephanie Brown, Director 

(650) 852-3506 

www.tolifefestival.org 

Albert L. Schultz 

Jewish Community Center 

4000 Middlefield Road, Bldg. R 

Palo Alto, CA 

All-day event 

21 - September 


Maggiano’s Restaurant 

175 Old Orchard Shopping Center 

Skokie, IL 

847-933-9572 

6:30 to 8:30 pm 

Jeffrey Manko, MD, Featured speaker 

Joel Charrow, MD, Moderator 

27 September 

Ted Meyer Art Exhibit 

Ted Meyer 

323.227.8836 

Ted@artyourworld.com 

National Museum of Health and Medicine 

Armed Forces Institute of Pathology 

6900 Georgia Avenue, NW 

Washington, D.C. 

Adrianne Noe, PhD and Curator & host of event 

Exhibit runs 9/2006 thru 3/2007 

28 September 


Maggiano's Troy 

2089 W. Big Beaver Rd. 

Troy, MI 

248-205-1060 

6:30 to 8:30 pm 

Greg Grabowski, MD, Featured Speaker 

Leopoldo Eisenberg, MD, Moderator 

29-30 September 

4th Joint National Conference of Russian 

American Medical Assoc. (RAMA) 

and Russian American Dental Assoc. (RADA) 

Park Central Hotel, NYC 

870 Seventh Ave. at 56th Street 

New York, NY 10019-4038 

contact: Elizabeth Schuttler 

Ph: 847-348-1074 

Elizabeth@mastereventsmeetingsplanning.com 

Speakers: 

Irwin M. Arias, MD 

Director, Demystifying Medicine for PhD at NIH 

Evan Bayh, US Senator for Indiana 

Baruch Blumberg, MD, Nobel Laureate 

John Hayes, MD Vice President, 

Neuroscience, Eli Lilly and Co. 

Sam Silverstein, MD 

Member of National Academy of Sciences

NGF National Publications Overview 

in Support of Individuals with 

Gaucher Disease and National Gaucher 

Awareness Month 2006 

Hadassah (National) 

Circulation: 309,030 

Published: 10x per year 

Reform Judaism ((National) 


Published: Quarterly 

Moment Magazine (National) 



New Voices (National) 



Jewish Woman(National) 



Heeb Magazine (National) 



World Jewish Digest (National) 


Published: Monthly 

United Synagogue Review (National) 



Baltimore Jewish Times 

Washington Jewish Week 

Jewish Radio: (60-second commercials) 

Talkline w/Zev Brenner 

Markets covered: 

New York, NY (and surrounding tri-state) 

S. Florida, Baltimore, MD, Washington, DC 

Shalom USA 

Markets covered: 

Baltimore, MD, Philadelphia, PA 

Williamsport, PA, Monroe, LA, Abbeville, SC 

In addition to the above English Gaucher Media 

Schedule, we have a Russian National Media 

Schedule running through the end of the year. 

The National Gaucher Foundation 

will be a sponsor at 

the Atlanta Jewish Festival 

Sunday, August 27, 2006 

Marcus Jewish Community Center of 

Atlanta 

Zaban Park 

5342 Tilly Mill Road 

Dunwoody, GA 30338 

Time: 11:00 a.m. – 5:00 p.m. 

For more information, contact Liora Petel 

Jewishfestival@atlantajcc.org 

Phone: 770.395.2598 

Website: 

http://www.pocet.org/national_festivals.asp 

A showcase of Jewish organizations, 

services, goods, food and culture, attended 

by approximately 8,000 in 2001 and growing 

in popularity every year. Here, amidst the 

most comprehensive representation of 

Atlanta's Jewish community organizations, 

is an opportunity for individuals to be part of 

perhaps the largest gathering of the Jewish 

community throughout the year in a single 

day! 

This is the largest single day, Jewish event 

in the southeastern United States. Jewish 

music, dancing, food, fine art, Israeli 

products and family fun. 

The National Jewish Festivals (NJF) 

Committee is organized to share ideas and 

resources for Jewish music and art festivals 

around the country.

September is National Gaucher Awareness Month 

Please Join Us! 

“KNOW YOUR HERITAGE” SEPTEMBER SUMMIT 

The National Gaucher Foundation will be convening a “Know Your Heritage” summit for Jewish 

community leaders and health care providers. This is in response to alarming new data that only 6% of 

American Jewry is aware of Gaucher disease ( Pronounced “Go-shay”) the most common genetic disease 

affecting the Jewish community. More common than Tay-Sachs disease, 1 in 15 Ashkenazi Jews are 

carriers of the Gaucher gene while 1 in 450 are affected by the disease. 

Signs/symptoms of Gaucher disease include one or more of the following: 

Fatigue, bone pain and easily fractured bones, 

enlarged abdomen and/or spleen, easy bruising or bleeding 

If left untreated, Gaucher disease can be: 

disabling and debilitating and lead to premature death 

As a key opinion leader in the Jewish community, we are asking you to help us develop and implement an 

action plan to significantly raise awareness about Gaucher and other Jewish genetic diseases. You will be 

provided with multi-media, take-home tools to help build awareness in your own communities. 

Where: 

When: 

th 

The Jewish Community Center, 334 Amsterdam Avenue (76 Street), Manhattan, NY 

September 12, 2006, from 10 a.m. to 12 Noon 

A kosher deli luncheon will be served. 

th 

Contact: Space is limited, so please RSVP to Gena Henderson at 617-937-2584 by August 28 . For 

more information, please call Gena or visit the NGF website www.gaucherdisease.org. 

KNOW YOUR HERITAGE PLEDGE CARD 

Cut out and return 

to Gena Henderson 

As a leader in the Jewish community, I, ______________________, pledge to help spread the word 

about Gaucher disease and the benefits of genetic testing to the members of my community and the 

organization I represent. 

Name: ______________________________________________________ 

Organization: _________________________________________________ 

E-mail: ____________________________________________Phone: _________________________________ 

I would like more information about (check all that apply): 

Scheduling a Genetic Counselor to speak at my organization. ______ 

Testing/Treatment centers for Gaucher patients _______ 

National Gaucher Awareness Month _______ 

Physician Referrals ______ 

Attn: Gena Henderson 

745 Boylston Street 

6th Floor 

Boston, MA 02116 

Fax: 617-267-9801 

I would like Gaucher collateral materials_______ to share with others. I would also like to receive 

the FREE Gaucher DVD narrated by Elliott Gould________

National Gaucher Disease Awareness Month Kick-Off 

September Summit Coalition 

Know Your Heritage Summit 

Below is a partial list of key opinion leaders in the Jewish community, who have agreed to help us 

develop and implement an action plan to significantly raise awareness about Gaucher and other 

Jewish genetic diseases. At the New York Summit, they will be provided with multi-media, 

Take-home tools to help build awareness in their own communities. 

ATIME 

Rabbi Josh Zern 

CALIFORNIA CLUB CHABAD 

Rabbi Halsbad 

CENTER FOR JEWISH GENETIC DISORDERS 

Karen Litwak 

HADASSAH 

Dale L. Mintz 

JEWISH ASSOCIATED DISEASE 

ACTION COMMITTEE 

Michael Margolis 

JEWISH GENETIC 

DISEASES CONSORTIUM 

MAIMONIDES MEDICAL CENTER 

Deborah Rosa, MS, CGC 

Shifra Krinshpun, MS, CGC 

MAR JEWISH COMMUNITY CENTER 

Gary Bomzer 

NATIONAL GAUCHER FOUNDATION 

Rhonda Buyers 

RABBI ISAAC N. TRAININ 

BIKUR CHOLIM COORDINATING COUNCIL 

Yoneson Meadows and Rabbi Lauber 

Become a member of the Coalition to 

raise awareness of Jewish Genetic 

diseases. 

By signing a “Know Your Heritage” 

pledge card, you are making a valuable 

contribution to your community and to 

those who are carriers of, or have 

Gaucher disease or any other Jewish 

genetic disease. 

These organizations and individuals 

are just a few of the many who have 

made a committment to their 

community and to this program. 

RUSSIAN/JEWISH FEDERATION COMMUNITY 

TOWERS 

Stella Davidovich 

UNITED JEWISH ORGANIZATION 

Miriam Berman

Wachovia Golf Classic 

PARTICIPATION LEVELS 

[ ] Diamond- $10,000: Two golf foursomes, fullpage 

ad in program, three hole signs and 

acknowledgment in all promotional materials, company 

logo on banner in registration area, sponsor signage at 

all beverage stations, special gift bags for all players. 

[ ] Platinum - $5,000: A golf foursome, full-page ad 

in program, three hole signs and your banner 

displayed at registration. 

For the benefit of individuals 

with Gaucher Disease 

Monday, August 14, 2006 

Tournament Players Club at Avenel 

Potomac, Maryland 

(301) 469-3700 

Presenting Sponsor: 

Schedule of Events 

11:00 AM to 12:30 PM 

Registration and Lunch 

12:30PM 

Golf Tournament...Shotgun Start 

[ ] Gold - $2,500: A golf foursome, half-page ad in 

program and one hole sign. 

[ ] Silver - $500: Full-page ad in program and one 

hole sign. 

[ ] Bronze - $350: One hole sign. 

[ ] Lunch Sponsor - $2,500: One golf twosome, 

corporate name on all luncheon materials, full-page ad 

in program and sponsor banner at registration area 

and hole sign. 

[ ] Putting Green Sponsor - $1,000: Corporate 

name on all putting green materials, sponsor signage, 

full-page ad in program. 

[ ]Foursome - $1,100 [ ] Twosome - $600 

[ ] Individual - $300 [ ] Non-Golfer - $100* 

*Enjoy the day’s events, including lunch & dinner 

5:30/6:00 PM 

19th Hole Reception 

Sponsored Nova Factor 

Awards Presentation, Raffle Drawing 

To Register online go to www.gaucherdisease.org. OR 

contact Sharon Adams at 800-925-8885 or email her at 

sharon@gaucherdisease.org. Registrations may also be 

faxed to Sharon Adams at 304-725-6429 by August 8th. 

Coming Soon! 

Friday, October 13, 2006 

11th Annual Golf Fore Gaucher Classic 

Philmont Country Club, Huntingdon Valley, PA 

Call Larry Kaliner at (610) 649-6766 for more information. 

Check our website at www.gaucherdisease.org for updates on these golf tournaments.

Join Us At The Carnival For Family Day For Gaucher 

to benefit individuals with Gaucher Disease 

September 17, 2006 (12 PM to 4 PM) 

Bring the whole family for a fun-filled day 

that includes: 

• Carnival booths with games and prizes 

• Caterpillar obstacle course and slide 

• Moon bounce 

• Balloon artist and face painter 

• Cotton candy, popcorn, pretzels, 

hotdogs and slushy machine 

You and your family will enjoy the day, while 

helping us with awareness and education of 

Gaucher disease, a debilitating, and often, 

life threatening disease. 

RSVP and pay by check by August 31, and receive 

a discounted rate! 

You may also pay for admission at the gate but please 

RSVP by 8/31/06 

On behalf of the Birkhahn Family and 

The National Gaucher Foundation 

Thank you for your attendance and support! 

All proceeds go to the 

National Gaucher Foundation 

Please RSVP and send your check 

payable to the National Gaucher Foundation 

by August 31, 2006 

To: Tracy & Ted Birkhahn 

13 Landing Drive 

Dobbs Ferry, NY 10522 

Phone: 914-674-2288 

tmbirkhahn@yahoo.com 

Admission 

Payment by Check and RSVP due August 31, 2006 

Checks should be made payable to the 


• $15 per person (or $20 at the gate on day of 

event) 

• $10 for children under 5 

• ______I will attend the Carnival with 

______adults and _______ children. 

• ______In addition to the admission fee, I wish to 

make a tax-deductible donation to the NGF in the 

amount of $_____________ 

• Payment in the amount of $____________ is 

enclosed 

• ______I cannot attend but have enclosed a taxdeductible 

donation in the amount of $___________to 

the National Gaucher Foundation to help in its efforts to 

find a cure or alternative treatment and assist with their 

education and awareness programs. 

Name:_______________________________________ 

Address:______________________________________ 

Ph:____________________Email:_________________ 

For directions to the JCC on the Hudson, please go to their website 

http://www.jcconthehudson.org/ . Click on General Information, 

then directions. 

Cut out and return in enclosed RSVP envelope. 

Location: 

JCC On the Hudson 

371 South Broadway 

Tarrytown, NY 10591 

Phone: 914-366-7898

Suzanne’s Physical Fitness Q&ACorner 

1) Q: I hear so much about the 'core'. What does that 

actually mean and why is it so important to strengthen? 

A: The core encompasses the stomach, pelvic, and back 

muscles. When the core is strengthened then all activities 

of daily living may become easier, less strain on the joints, 

and perhaps less back pain. A strong core enables the 

body to be more erect, more balanced (helps to hold the 

body in a more upright position preventing any chances of 

falling), and makes the body feel more stable. A snowball 

effect will ultimately take place as you may notice an 

improved posture in the sitting and standing position. 

Strengthening your arms and legs are definitely needed for 

a workout regimen. But you're definitely leaving out an 

important part of the body if you don't work out the core. 

All the muscle groups work in tandem. If the core is weak, 

you may notice that you have poor balance, poor posture, 

back weakness, back pain, and weak stomach muscles. 

A good core tip is, no matter what activity we are doing it 

is so important to keep the stomach muscles 'engaged'. 

That simply means to keep the stomach tight...thinking 

that your navel is touching your spine. As a result of 

thinking that way all the time, you'll find that most 

activities will be essentially effortless. 

The following exercises are examples of various core 

exercises: Before you start any exercise program, please 

consult with your physician first. 

Please stop the exercise if you feel any sharp pain. It is 

normal to feel some muscle soreness and discomfort, but 

it should not be long lasting. A normal time-frame to feel 

some soreness is 24-48 hrs. after an exercise. 

The following exercises are safe to be done daily or every 

other day. 

a) Modified Sit-ups: lie on your back, knees are bent (if 

that's difficult - place several pillows under your knees), 

hands placed behind your head, tighten your stomach as 

you think of your navel going towards your spine, keep 

that position as you raise your head and shoulders up and 

down...keep the stomach tight throughout the repetitions. 

Perform 20 repetitions. 

b) Knees into the Chest: lie on your back, knees are bent, 

stomach tight - think navel towards spine - head and arms 

are down, raise your knees into the chest then slowly 

down...Perform 20 repetitions. 

c) Back Extension: (if you have spinal stenosis or 

osteoporosis please be extra cautious doing this exercise - 

do not come up too high)... 

lie on your stomach, place 1 to 2 bed pillows under your 

ribcage towards your pelvis, legs are down on the floor, 

arms by your sides with your palms up, keep your arms 

down, slowly raise your head and chest up towards the 

ceiling then slowly lower to starting position...Perform 10 

repetitions...then perform another 10 with a 3 second 

hold. 

d) Arms Up Overhead: position as (c), raise your arms up 

overhead, (if that's difficult - please place them at a 

comfortable range), slowly raise your head, chest and 

arms up and down...Perform 10 repetitions ...then perform 

another 10 with a 3 second hold. 

2) Q: Why do I have pain every time I try to exercise? 

Is that normal? 

A: It is not normal to feel pain. Perhaps the exercise 

you are choosing is a bit challenging for your body 

structure, size, and physical capabilities. It is 

important to realize that when you choose an exercise 

program, you are only competing with yourself. Never 

compete with your friend, spouse, family member, or 

a stranger at the gym. You will only hurt yourself. 

Exercise should feel good. The following are pointers 

to keep in mind: 

a) To tone: keep your weights light and increase your 

repetitions. 

b) Never strain to perform any exercise. If you are 

straining then the exercise is much too difficult or you 

have chosen too much weight. 

c) Body Form: is very important. If you find that 

you're slouching during a standing or sitting 

exercise...straighten your trunk by tightening your 

stomach muscles...remember to think of your navel 

towards your spine. 

d) Fatigue is normal with any exercise routine. Keep 

in mind that you don't want to fight the fatigue. That 

means...rest the body! 

3) Q: I'm in a wheelchair for most of the day as I have 

suffered spontaneous fractures in my lumbar area. 

What exercises would be safe for me while I'm in my 

wheelchair? 

A: Use very light weights for your arms and legs. I 

would suggest 1-2 lbs. Have someone assist you 

putting the ankle weights on. Please show your 

physician the following exercises before you begin. 

Also, please stop the exercise if it causes too much 

pain. 

The following exercises are just a few that may get 

you started. I would suggest you doing them 4-5 

times weekly. 

a) Knee Extension: slowly straighten one knee and 

hold the position for 3 sec. then lower ...perform 10 

repetitions with one leg then do the same with the 

other. 

b) Thigh Raise: slowly lift one thigh up towards the 

ceiling then lower to starting position ...perform 10 

repetitions with one leg then do the same with the 

other. 

c) Alternate Arm Push Out: holding onto the weights 

in each hand, palms face each other, push one arm 

out in front of you as you're straightening your elbow 

then return towards your body then push the other 

arm out...alternate with the pushing movement 

...perform 10 repetitions with both arms. 

d) Bend and Straighten the Elbows: holding onto the 

weights, palms face each other, bend and straighten 

your elbows in front of you...alternating 

arms...perform 10 repetitions with both arms. 

One thing to keep in mind - NEVER push your weights 

up towards the ceiling or up overhead - as that puts a 

lot of abnormal pressure in your lumbar region.

Suzanne Krupskas is a registered 

physical therapist since 1978. She has 

experienced multiple symptoms from 

Gaucher disease since being 

diagnosed in 1981. Suzanne is an avid 

speaker on Gaucher disease, and has 

written several articles on the 

importance of exercise and physical 

therapy for those who are living 

with the disease. She can be 

reached by calling the NGF or by 

email: suzkrup@comcast.net. 

Financial Assistance Programs Available 

for Individuals with Gaucher Disease 

Care and Care+Plus Programs 

The National Gaucher Foundation, Inc. sponsors two 

financial grant programs to help families and 

individuals with Gaucher Disease to pay for certain 

Gaucher-related expenses. To be eligible for either 

program, an applicant must: 

a) Have Gaucher Disease 

b) Demonstrate extraordinary financial hardship 

for eligible Gaucher related expenses 

CARE PROGRAM 

The CARE Program grants funds to subsidize, or to 

purchase in full, a health insurance policy (primary, 

secondary or both), to which the patient is entitled or 

eligible, but for which the patient does not have 

adequate personal resources to enroll. 

CARE+PLUS PROGRAM 

The CARE+PLUS Program provides financial 

assistance to eligible Gaucher patients for a variety of 

Gaucher-related expenses, such as diagnostic tests, 

infusion charges, travel expenses, and over-the-counter 

medications. The program excludes deductibles and 

co-pays. 

Both programs involve an application process and 

review by the Care Board for determination of 

financial and medical necessity. 

The National Gaucher Foundation realizes that 

Gaucher patients have extraordinary needs that may 

cause a financial burden on themselves and their 

families. These two programs have been developed to 

lighten this burden. For additional information 

contact: Barbara Lichtenstein, Program Director of 

the CARE and CARE+PLUS Programs at 

(866) 346-8176 or (301) 963-4489. 

NGF’s Fundraiser Items 

Available Throughout the Year 

To purchase items in support of the National Gaucher 

Foundation and individuals with Gaucher disease go to 

www.gaucherdisease.org and click on Support the 

NGF. 

Our wristbands say, “Gaucher - Treat It & Beat It”. They 

are available for sale at our website at 

www.gaucherdisease.org for $5.00 each. Funds raised 

will help individuals with Gaucher disease, through 

research, education and awareness. 

If you are interested in selling wristbands in larger 

quantities, for a fundraiser, please contact 

Cyndi Frank, NGF’s Director of Development at 

cyndi@gaucherdisease.org or call her Toll free at 

877-649-2742. 

And don’t forget our “ Little People” pins. They are one 

of a kind and a treat for the eyes as well as to wear and 

can be purchased at our website. 

To see all of the pins that are available, you can visit 

www.Lucinda.com. Currently in NGFs stock includes” 

Little People, Nurturing, Angels and 

Ladies Red Hat Pins( available on request. 

$14.00 each 

$5.00 Each 

If you are interested in selling these pins to help the NGF 

raise funds for education and awareness of Gaucher 

disease, please contact Sharon Adams at 800-925- 

8885 or by email at ngf@gaucherdisease.org. 

For the latest News and Events visit our website often 

at www.gaucherdisease.org. 

All donations should be mailed to 

Sharon Adams: 

61 General Early Drive, Harpers Ferry, WV 25425

Cyndi Frank 

Director of Development 


From The Development Office..... 

As we gear up for National Gaucher Awareness Month this September, your donations will help to not 

only raise awareness of Gaucher Disease, but they also help to find a cure by funding vital research 

programs, meet the ever-increasing needs of patients and their families, and promote community and 

physician awareness and educational programs. Thank you for your generosity in giving to the National 

Gaucher Foundation. 

There are many ways you can help the NGF in its mission to help people with Gaucher Disease: 

• Hold a Fundraising Event: An event can be small or large, fancy or fun; you can hold it in a small 

town or big city. You can throw a dinner party and invite neighbors and friends and ask them to donate 

to the NGF, or you can organize a run or walk, bake sale or bowl-a-thon and get the local community 

involved. You can also ask local businesses to support your cause. 

• Make a Gift to the NGF: An unrestricted gift will help the NGF where it is most urgently needed. 

You can give a cash gift by check or credit card, via payroll deduction through your employer, or you can 

give a gift of stock. 

• Corporate Sponsorship and Workplace Giving: Check with the human resources department at 

your company to find out their policies on charitable giving. They may make corporate donations to 

charities recommended by an employee, and they may have a matching gift program where they'll match 

your charitable contribution dollar for dollar or even more. 

• Planned Giving: There are many ways you can make a lasting contribution to Gaucher Disease. 

When deciding on your estate plans, please remember the NGF in your will, living trust or estate plans. 

Please contact Cyndi Frank, Director of Development, at 877-649-2742 or Cyndi@gaucherdisease.org if 

you would like to help the NGF with fundraising efforts. 

To make a gift or donation, please contact Sharon Adams, Director of Membership and Services, at 800- 

925-8885 or ngf@gaucherdisease.org. 

All donations should be mailed to Sharon Adams, 61 General 

Early Drive, Harpers Ferry, WV 25424. 

Remember, all donations and out-of-pocket expenses used toward holding a fundraising event are taxdeductible 

under section 501(c)(3) of the IRS Code.

Gaucher Awareness Online Auction 

Throughout the month of September 2006, during National Gaucher 

Awareness Month, the NGF will be holding its 1st annual online 

Gaucher Awareness Auction to help raise funds for the cure. 

Be An Item Donor & Ask Your Community To Donate As Well! 

Visit our web site at www.gaucherdisease.org, click on the Online Auction banner and then 

click on Donate an Item or contact Cyndi Frank at Cyndi@gaucherdisease.org or 

877-649-2742 for the donation form. We're looking for all types of items ranging from rare, 

once-in-a-lifetime experiences (such as meeting a celebrity or political figure) to travel get-aways 

to gift items, services and all different types of gift certificates in the following categories. Since 

people will be bidding online from all over the country, we need items both local and national. 

. Leisure and 

. Sports Entertainment .Tickets .Spa 

.Getaways .Music .Home .Dining 

.Travel .Gift Certificates .Collectibles .Film/TV 

The Benefits of Being a Donor: Exceptional High Credibility Exposure 

Each item you add to our auction catalog, we'll include your logo and a link to your website. 

It's a great way to drive traffic to your site! 

To promote the auction, we'll send at least 10 targeted email communications to our entire 

database of committed sponsors, donors, members, friends and volunteers. 

We'll feature the Gaucher Awareness Auction on our website homepage, put reminders in 

our newsletters, send regular emails, and advertise with information on National Gaucher 

Awareness month in magazines, newspapers, radio and television. It means that more 

people will visit our auction catalog, see your logo and potentially click through to your 

website. 

In promotional emails and on the auction homepage, we will highlight “Featured Items,” 

possibly yours. Bidders can click directly through to the item in the catalog, where they'll 

see the link to your website. 

Remember, because it's online, the Gaucher Awareness Auction is an outstanding “viral” marketing 

tool. Our members will pass along our email messages to their own friends and family, so there's 

no telling how many people our message will reach. 

You can help make the Gaucher Awareness Auction happen. 

* Get involved NOW! *

Special Contributions 

April 1, 2006 June 8, 2006 

In Honor Of 

Grant Bowen by Mr. & Mrs. Jim Bowen, Mr. Bernard Mille, and Mr. & Mrs. Alan 

Painter 

Betty Canter's Birthday by Mr. & Mrs. Dick Radford 

Mr. & Mrs. Alvin Canter's Anniversary by Mr. & Mrs. Dick Radford 

Flory Catain's Birthday by Mr. & Mrs. Dick Radford 

Vera and Ron Dombcik by Mr. & Mrs. Mike Weissman 

Gertrude DuBowe's Birthday by Mr. & Mrs. Dick Radford 

Brady Jackson by Tracey DuBois 

Robin Jarrett and Elly Dvir's Wedding by Elsa-Lu and Arnold Berkowitz 

Toby Kaplan's Birthday by Ron Kaplan 

Diane and Chuck Kaufman by Irving Wolbrom 

Ira and Florence Levy's Birthdays and Anniversary by Mr. & Mrs. Dick 

Radford 

Matthew Lewin's Bar Mitzvah by Barbara Kerner 

Casey Dawn Marsalis's Birthday by Brian Winkelmann 

Anndi McAfee by Paula McAfee 

Mr. & Mrs. Arthur Meisel's Anniversary by Mr. & Mrs. Dick Radford 

th 

Mr. & Mrs. Gil Mintz's 50 Anniversary by Mr. & Mrs. Bud Menin, Davida Sol, 

Dr. & Mrs. Donald Wolmer, Mr. & Mrs. Gerald Cantor, Sylvia Pine, Mr. & Mrs. 

Milton Katzman, Susan Shapiro, Mr. & Mrs. Mendelsohn, Dr. & Mrs. Arnold 

Leibowitz, Joan Eben, Seymour Spira, Mr. & Mrs. Lenard Glauber, Addison 

Delray Travel, Mr. & Mrs. Norbert Strauss, Mr. & Mrs. Charles Krasny 

Marvin Oberstein's Birthday and Mr. & Mrs. Oberstein's Anniversary by Mr. & 

Mrs. Dick Radford 

Ernest Ostreicher's Birthday and Mr. & Mrs. Ostreicher's Anniversary by Mr. & 

Mrs. Dick Radford 

Judy Radford's Birthday by Mr. & Mrs. Bernie Klar 

Barbara Rogal's Bat Mitzvah by Mr. & Mrs. Gerald Farbman 

th 

Mr. & Mrs. Stan Schneiderman's 50 Anniversary by Elsa-Lu & Arnold 

Berkowitz 

Dr. & Mrs. Henry Stein's Anniversary by Mr. & Mrs. Dick Radford

In Memory Of 

Sam Bayliss by Mrs. Muriel Carter 

Ron Bokor by Mr. & Mrs. Sanford Klein 

Aline Breskin's Son-in-law by Mrs. Judy Klein 

Eli by Mrs. Muriel Carter 

Sam Gervich by Mrs. Pat Krieger 

Joan Gilbert by Elsa-Lu & Arnold Berkowitz 

Gloria by Mrs. Muriel Carter 

Evelyn Hochberg by Mr. & Mrs. Albert Miller and Mr. & Mrs. Herbert Steiner 

Barbara Klausner by Mr.& Mrs. M. David Minnick, Barry Freeman & Robbin 

Itkin, Michael Gottfried, Mr. & Mrs. David Maurer, Richard Kremen, Mr. & Mrs. 

Bernie Sharf, Mr. & Mrs. Dick Troop, Allard & Fish 

Reynold H. Greenberg, Jr. by Harriet Greenberg and Elsa-Lu & Arnold 

Berkowitz 

Jean Rose Klein by Mr. & Mrs. Mort Becker, Mr. & Mrs. Phil Coleman, Mr. & Mrs. 

Phil Brunstein, Mr. & Mrs. Steven Hamburg, Mr. & Mrs. Lawrence Horwitz, Mr. 

& Mrs. Walter Hofman, Mr. & Mrs. Ted Cable, Mr. & Mrs. Norman Topping, 

Robert Tasner, Mr. & Mrs. John Moore and Mr. & Mrs. Lee Rosenberg, Mr. & 

Mrs. Armand Thomas 

Gladys Kravitz by Elsa-Lu & Arnold Berkowitz 

Brenna Laws by Network for Good 

Theodore Herzl Levin by Mrs. Sheila Kremer 

Bill Mozo by Elsa-u and Arnold Berkowitz 

Henry Newhouse by Mr. & Mrs. Norman Milkes and Sharon Milkes 

Joey Newhouse by Mr. & Mrs. Josh Udler 

Harry Pollock by J. Peter McCubbin, Soraya & Younes Nazarian, Bradley 

Kastan, Mr. & Mrs. Jeff Silberman, Mr. & Mrs. Greg Farber, David Freedman, 

David Nazarian, Mr. & Mrs. Stewart Brookman 

Susan Pucknell Moran by Mr. & Mrs Felino Deleste, Rita & Julie Freed 

Gertrude Silk by Flip & Mike Bortnicker, Harriet & Art Stulmake, Marsha & Ken 

Berman, Joan & Karen Tabor, Elizabeth & Lawrence Matzin, Susan & David 

We appreciate the Special Contributions to the National Gaucher Foundation on behalf of 

those who have donated in Honor of, or In Memory of a cherished loved one and pay tribute to 

their honor and memory through publication of their names.

Behind the planning for 

this successful fundraiser is 

Lisa Kmiec, Township 

Solicitor of Cherry Hill and 

mother of Andrew Fogel, 4 

years old, who was 

diagnosed with Gaucher 

Disease last year. 

Picture on left: 

Surrounding check presented to the 

NGF: From left: Event organizer Lisa 

Kmiec with son Andy Fogel and 

daughter Caroline Fogel. Also 

holding check is Mayer Bernie Platt. 

Moving Toward a Cure With 5K Run/Walk 

By Cynthia J. Frank, Director of Development 

National Gaucher Foundationg 

Town of Cherry Hill raises $5,135 for Gaucher Disease 

Lisa Kmiec of Cherry Hill, New Jersey held her first ever Moving Toward a Cure 

th 

walk/run in Cherry Hill on May 7 . Cherry Hill's community-minded employees not 

only live and serve in their Township, they willingly donate their free time to give 

back in various ways everyday. 

The community helped to raise funds for the National Gaucher Foundation in two 

ways: 

th 

A group of the Township's employees participated in the 27 annual Blue Cross 

th 

Broad Street Run in Philadelphia on Sunday, May 7 . This 10-mile race is a 

regional attraction but specifically was run by “Team Cherry Hill” to raise support 

for the National Gaucher Foundation. On the same day, a 4-mile walk at Cooper 

River Park in New Jersey was also held to raise funds for the NGF. Employees were 

welcomed to participate in the run or walk or to make a contribution to Team Cherry 

Hill. A total of $5,135 by over 75 donors was raised altogether by the two efforts. 

Behind the planning for this successful fundraiser is Lisa Kmiec, Township Solicitor 

of Cherry Hill and mother of Andrew Fogel, 4 years old, who was diagnosed with 

Gaucher Disease last year. Cherry Hill Mayor Bernie Platt also participated in the 

event and wrote a proclamation to the NGF, which he presented with the check. 

Donations from Moving Toward a Cure will help fund research for Gaucher Disease. 

If you would like information on how to start a Walk/Run in your community, please 

contact Cyndi Frank at 877-649-2742 or Cyndi@gaucherdisease.org.

Genetic Alliance Announces 

2006 Award Winners 

Edwin H. Kolodny, M.D. 

New York University School of Medicine 

Department of Neurology 

550 First Avenue 

New York, New York 10016 

Dr. Edwin Kolodny is a recipient of the Genetic Alliance Art of Listening Award. An alumnus and 

longtime faculty leader at New York University, Dr. Kolodny works tirelessly with patients and families 

living with genetic conditions including Canavan, Tays-Sachs, Gaucher, and Fabry. 

The following are just a small sampling of the testimonials praising his work: 

Lesley Bennett writes: 

For the last 16 years, Dr. Kolodny has been my daughter Kelly’s neurogeneticist.. . . During Kelly’s first 

appointment, my husband and I realized that Dr. Kolodny was a unique physician who listened, then 

offered advice not just for Kelly, but for our entire family. He was compassionate and not afraid to tell us 

that he might not be able to diagnose Kelly’s specific neurogenetic disease. He understood our 

frustration and told he that we had to become Kelly’s advocates, and that he would help and try to 

improve the quality of Kelly’s life. Over the last 16 years, as Kelly’s neurogeneticist, Dr. Kolodny has 

done that by going out of his way to answer questions, offer advice, and communicate with Kelly’s 

pediatric specialist. Dr. Kolodny even interrupted his sabbatical several years ago to return our frantic 

call for help and saved Kelly’s life when he realized she was having a life-threatening metabolic drug 

reaction...Idonotknow how many patients and families Dr. Kolodny has gone out of his way to help, 

but I suspect it is a large number. 

Rosalind Poss Rosen, former President of the Canavan Foundation, testifies: 

The Canavan Foundation has had many opportunities to refer families with children with Canavan 

disease (CD) to Dr. Kolodny. Without exception, the feedback we have received from these and other 

families is that Dr. Kolodny is a unique, caring physician who is dedicated to his young patients and the 

concerns of their parents. It is a rare person who can communicate with and assist parents whose 

children have a fatal disease such as CD, but that is a role that Dr. Kolodny regularly fulfils. 

Grateful Parents (who wish to remain anonymous) affirm: 

Dr. Kolodny has given us tremendous support, both medically and ethically. He was most patient in 

helping us through many complex decisions. He has listened very carefully to all aspects of our difficult 

problems, not only with his ears, but also with his heart, and has compassionately offered us invaluable 

direction. He has shown personal interest in our child’s well-being, making it a point to follow her 

progress over the past decade ...Heisoneofthemost altruistic and humanitarian doctors we have 

encountered. He truly maintains his Hippocratic Oath. 

We honor Dr. Kolodny with the Art of Listening Award for understanding the importance of listening as 

an invaluable key to understanding and for his ability to ease the difficult—often frustrating—journey 

faced by individuals and families dealing with the uncertainties and ambiguities of a genetic condition. 

Thank you, Dr. Kolodny. 

Please join us in celebrating Dr. Kolodny at the Awards Banquet on Saturday, July 29, as part of the 

Genetic Alliance Annual Conference.

Scarred For Life 

Mono-Prints of Surgical Scars 

Art Exhibit by Ted Meyer 

National Museum of 

Health and Medicine 

Armed Forces Institue of Pathology 

6900 Georgia Avenue NW 

Washington, DC 20307 

September 27, 2006 - March, 2007 

Hosted by Dr. Adrianne Noe, Phd and Curator 

and the National Gaucher Foundation 

Structural Abnormalities 2.1 

2002 

Jenny In The Middle 

2003 

In recent years, and with the advent of new 

treatments and additional joint replacements, 

Ted considers himself normal and healthy. His 

work has shifted from the deeply introspective 

to images that highlight other people’s health 

problems. His “Scar-Art” is an ongoing series of 

mono-prints of human scars that chronicle lifechanging 

events in people’s lives. The resulting 

abstractions are subtle, yet emotionally 

charged, a stark contrast to his occasionally 

illustrative work. 

Currently he is working on his “Insights on Codependency” 

series of stylized and brightly 

colored multi-figure oil paintings, and his 

“Awkward Children” series depicting children in 

hapless situations. In this case, Ted’s artistic 

proclivities toward pop-surrealism stand firmly 

against the highly abstract representations in 

his “Scar-Art.” Once again, Ted strikes a fine 

balance between the representational and the 

non-representational. 

He has also written and illustrated four books: 

Shrink Yourself: The Complete Do-it-Yourself 

Book of Freudian Psychoanalysis, The Butt 

Hello—And Other Reasons My Cats Drive Me 

Crazy, Cats Around the World, and Good Things 

You Can Learn from Bad Relationships. Ted is 

also a contributing writer for Coagula 

Contemporary Art Magazine. 

Continued from Cover

Webhits to 

NGF Site 

The chart below indicates the number of visitors to our site and the level of interest from Jan. To June 2006. We 

are pleased to find so many individuals seeking information about Gaucher disease from the National Gaucher 

Foundation’s website at www.gaucherdisease.org 

# of Pages # Of 

Visits Viewed Hits 

Jan 2006 5017 18727 60787 

Feb 2006 5433 21767 66204 

March 2006 6122 24862 70475 

April 2006 5012 20281 58358 

May 2006 4630 18005 55128 

June 2006 3741 14139 43584 

Total 31532 123706 372464 

Gaucher Treatment Center Stories for the 

Gaucher Community Newsletter 

Beginning with the Fall issue of our newsletter, the National Gaucher Foundation 

will begin publishing stories related to the Gaucher Treatment Centers around the 

country. We look forward to having them share their stories with our audience. 

Look for our first story which deals with the aftermath of Hurricane Katrina, and 

the stuggles faced by Tulane Medical Center located in New Orleans, Lousiana 

The NGF invites you to contact rosina@gaucherdisease.org if you would like to 

have an article published about your Treatment Center.

The National Gaucher Foundation’s newest ad, is running as a compliment to our 60-second radio 

commercial which can be heard from our website at www.gaucherdisease.org

This ad, called the “Younger/College” ad has been running in publications for younger audiences 

such as New Voices, which reaches about 450 Jewish colleges and is also distributed to the Hillels.

Inside This Issue: 

>Ted Meyer Article and Art 

>Gregory Grabowski, MD Tribute 

>Emerging New Treatment for Gaucher Type1 

>National Gaucher Awareness Month Schedule of Events 

>Know Your Heritage - Sept. Summit Information 

>Wachovia Golf Classic August 14, 2006 and 

>Golf Fore Gaucher Classic-NGF DV Chapter Oct. 13, 2006 

>Suzanne’s Physical Fitness Q&A 

>Special Contributions: In Honor Of & In Memory Of 

>Moving Toward a Cure Run/Walk event in Cherry Hill, NJ 

>Edwin H. Kolodny, MD wins Genetic Alliance Award 

>NGF Webhits and new ads 

The Newsletter attempts to report all items of 

interest relating to Gaucher Disease. We will not 

willingly reproduce inaccurate or libelous 

material. Any treatment, therapy or institution that 

is recommended in the newsletter should be 

discussed with an individual’s local physicians. 

Neither the NGF nor contributing authors take 

responsibility for such recommendations. The 

editor reserves the right to make corrections as are 

appropriate and in accordance with established 

editorial practice in material submitted for 

publication. 

The National Gaucher Foundation is a nonprofit, 

tax exempt organization founded for 

the purpose of encouraging support and 

raising funds to promote research into the 

causes and cure of Gaucher Disease. Funds 

will be specifically directed to scientific, 

educational or literary purposes in keeping 

with a charitable foundation. 


Gaucher Community News 

61 General Early Drive 

Harpers Ferry, WV 25425 

National Gaucher Foundation

Gaucher Community News - National Gaucher Foundation

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