WAYNE'S (other) WORLD - National Gaucher Foundation

Gaucher Disease Newsletter 

Spring 1996 Volume 9 Number 13 

A Publication of the National Gaucher Foundation 

Founded by Rubin Bakin 

WAYNE'S (other) WORLD 

by Wayne D. Rosenfield, Ph.D. 

Norwich, Connecticut 

At the first national convention of the National Gaucher Foundation, several of us, chatting over 

cocktails, noted the irony of being at a party where the most common line was "Let me tell you 

about my operation." And, perhaps most ironically, when the line was used, the other party-goers 

were actually interested. There was interest, perhaps even fascination, but there was surprisingly 

little complaining. The people I encountered each seemed to have two distinct stories to share: The 

Medical Story, and the Rest-of-My-Life Story. I too talked about the two intertwined strands of my 

life, and I felt a lot of connection to these people. We were all productive in our own ways, hopeful 

about the future, and interested in learning about each other. And, brought together by some 

unfortunate similarities in our DNA, we were aware of being distant relatives. 

There was little to suggest that my early life was anything but typical. Oh, I had more nosebleeds 

than my friends, and a nosebleed could start at any time -- in class, after class, seemingly timed for 

the maximum degree of adolescent embarrassment. And my spleen was a little bigger than normal, 

or so I was told, but nothing that would cause any day to day concern. Not until I had a massive 

femoral necrosis with considerable damage to my right hip at age fifteen was there a diagnosis of 

Gaucher Disease. I spent my high school years using crutches, with reconstructive surgery 

scheduled for two weeks after graduation. I didn't realize at the time what "low platelets" meant. 

Nor did I realize how many times my normal blood volume I would receive in transfusions. Years 

later, Dr. Henry Mankin would introduce me to an orthopaedic resident, saying "This is Wayne. 

After surgery he bled into the wound and I bled into my gut." The recovery was slow and painful, 

but I began college that September, and dropped the cane before the end of my first semester. 

Some academic honors and three degrees later, I was a twenty-five year old doctoral student 

during a campus outbreak of infectious mononucleosis. My Gaucher Disease conspired with the 

mononucleosis to stretch my spleen to the size of a baby ready to be born. My spleen began to bleed 

into my abdomen, requiring emergency surgery to remove it. (My children are very proud that, 

although everyone's Daddy has a bellybutton, their Daddy has both a bellybutton and a 

bellyzipper.) 

My reconstructed right hip began its expected deterioration, and two years later I had a noticeable

limp as I received my Ph.D. I've heard that recent Ph.D.'s often look for new goals, and get 

depressed when they can't find any. I didn't get depressed --- I got a bicycle. And I began riding 

through the New England hills from the little house my wife and I owned in Connecticut. The hip 

did get a bit sore on these rides (my favorite route was 27 miles), but I only called home to be 

rescued once or twice. (O.K., it was more than that, but I still put on a lot of miles!) By age thirtyfour, 

walking was becoming a chore. I rode in the 30-mile Five-Borough Bike Tour in New York, 

because, after all, a bicycle is a very good wheelchair, and I certainly couldn't walk that far. Dr. 

Mankin agreed that it was time to replace the hip, and a date was set. 

As the time for my surgery approached, we learned that my wife was pregnant --- a welcome, if 

unexpected development. It would be necessary to confirm that everything was normal with the 

pregnancy before proceeding with the hip surgery. It would be foolish to have both of us 

compromised at the same time. We learned that the pregnancy was fine. And my surgery was also 

fine, not at all like my experience fifteen years earlier. My wife helped me to recover, although the 

sight of my surgical wound made her even more nauseous. I was sufficiently recovered later that 

year to hold and carry --- pain-free --- my son Aaron, and seventeen months later, his brother 

David. 

With two babies in the house I had a lot less time to ride my bicycle. But I did want, just once, to 

complete what is known in bicycling circles as "a century": one-hundred miles in one day. I 

entered the "Vernon to Vernon Bike Tour", a one-hundred-and-something mile ride through the 

New England hills from Vernon, Vermont to Vernon, Connecticut. Just like getting a Ph.D., 

completing "a century" is another of those things that I don't feel compelled to do more than once! 

The titanium hip has been trouble-free, although I diligently appear at Dr. Mankin's office for 

regular checkups. Six years after my hip was replaced, though, I did notice a small bump on the 

opposite leg which was becoming quite tender. I thought that I would bring it to Dr. Mankin's 

attention during my next office visit. I changed my appointment to be a few weeks sooner when I 

realized just how much ibuprofen I was taking for this little bump. X-rays showed an eroded area 

of bone under the bump, and some sort of fluid in an area over the bone. It looked very strange, 

even to the orthopaedists, but was probably some sort of Gaucher Disease manifestation. Whatever 

it was, surgery would be necessary to fix the area of bone loss. During the week between the office 

appointment and my scheduled surgery, the orthopaedists mulled over what they were seeing on 

the x-rays. The observations did not fit neatly with a conclusion of Gaucher Disease as the sole 

cause of the bone's erosion. Nor could Gaucher Disease account for the fluid (or whatever it was) 

making up the bump that was so tender on the surface. 

When the surgical team examined the bump with their own eyes the next week, they knew what 

they were seeing. But they waited for the pathology report before confirming to me that I had a 

rare sarcoma, a soft-tissue cancer. And it was big, invasive, and destructive. As my lungs were 

scanned, looking for the metastases which would signal the spread of this high-grade malignancy, I 

thought of my sons. And I wondered how much a seven-year old and a six-year old would 

remember of their Dad.

But my lungs were clear. Dr. Mankin told me "You have one tumor in your body," as he pointed to 

my leg, "and it's right there." The sarcoma apparently began in one of the many Gaucher lesions 

throughout my skeleton. This tiny infarction, like almost all of the others, would hardly have been 

of any concern. Except of course, that this Gaucher lesion provided just the right environment for 

a cancer to take hold. 

Radiation therapy seemed pretty easy at first. After a week, though, the fatigue it caused reminded 

me of the mononucleosis some years earlier. After a period of radiation, I had surgery to remove 

the tumor, along with seven inches of tibia, and the overlying muscle and skin. A new tibia was 

fashioned from a piece of donor bone, a muscle from underneath my leg was flapped over the top 

and reconnected, and a layer of skin was sliced from my thigh to graft on top. 

It was an amazing procedure. It would have been even better if it had worked. A month later, the 

wound was seriously infected and would need to be debrided in the operating room just after noon, 

in a one-hour procedure. I knew when I awakened at 6pm that the news would not be good. The 

infection, it turned out, surrounded the donor bone, and was beginning to move into my other 

tissues. Of course, the infection imperiled not only my leg at this point. The donor bone was 

replaced with some temporary hardware, to mark time while I fought the infection. I went home 

two weeks later, in considerable pain, and in an immobilizing cast extending from my hip to my 

toes, connecting myself to six different doses of intravenous antibiotics each day. 

After about a month, with the infection under control, I was still left with the inescapable 

conclusion that the wound was not healing. The tissues which had been already compromised by 

Gaucher Disease had been further damaged by cancer, radiation, cancer surgery, infection, and 

infection surgery. In addition, the pathology report from the cancer surgery revealed that there 

was a 1mm margin at one part of the tumor. The margin is the area of healthy tissue removed with 

the tumor, as a sort of insurance that all of the malignancy is gone. A desirable margin is 2-3cm, 

and I had a fraction of that. This left me with a significant risk of reoccurrence of a malignancy 

which was already known to be highly aggressive. Indeed, I had myself seen that original bump 

grow over the course of a couple of months. If errant metastases began elsewhere, I could be faced 

with cancer in my lungs or other organs. 

I was presented with several options by the oncologists and the orthopaedists: Trying another bone 

transplant in a few months, amputating the limb, or taking the fibula from my other leg to use as a 

live-tissue bone graft. None of the options would be simple, and there was no assurance of success 

for either of the grafting options. Each choice would involve a degree of risk, more surgery, and a 

lengthy period of rehabilitation, even if there was no reoccurrence of the cancer. I appreciated 

their candor. And although I had full confidence in my caregivers, and much support from my 

family, the final decision would be mine. The surgeons, after presenting me with the options, would 

follow my wishes.

I was quite certain that I needed to reduce my cancer risk before any other consideration. I was 

almost decided on the course I would take. But first I needed to take a trip with my father to the 

Shriners Hospital to see firsthand what is being done with prosthetics, and what level of function 

such devices offer. After a morning observing the children attending the Limb Deficiency Clinic, 

my decision was confirmed. 

A few days later, I was lying outside of the operating room, when I received the news that the latest 

x-rays of my lungs were still clear. I looked for a phone to call my family, but couldn't find one. I 

told them the good news later in the day when I returned to my hospital bed, with my leg 

amputated at the knee. 

Less than a month after this surgery was my fortieth birthday. My father, revealing to me that his 

fortieth birthday was a rather traumatic milestone for him, asked me how I felt. I looked him in 

the eye, and with a wry grin answered, "Well, given the circumstances, I'd say it's an 

accomplishment." But this birthday was supposed to be special. I had hand-picked the seats for 

The Phantom of the Opera months before "the bump" had ever presented itself, and I was NOT 

going to miss this show. The most immediate problem was that I was not fully mobile yet. So I 

chartered a chauffeur-driven limousine to bring my wife and me from southeastern Connecticut to 

New York for the day; Zabar's for goodies, the Four Seasons for lunch, then to the theater, and 

home. It was a great day, and didn't even cost an arm and a leg. 

Two weeks later my prosthetist asked me about my goals. "That's easy," I said. "I want to walk 

with a normal gait, go dancing, and get back on my bicycle." And then I asked, "Am I being 

realistic?" I got the answer I was looking for. 

I can't say that recovery from this latest episode has been easy. But I have some very good 

cheerleaders. The first time I got back up on two wheels, the street echoed with "You're doing it, 

Dad! You're doing it!" The terror I feel before getting the results of each new lung scan is 

beginning to fade. My gait is better now than it was in college with that newly-reconstructed hip. I 

walk unaided (O.K., so I did use a cane at Disney World!) and my walking range is essentially 

unlimited. My bicycling range is up to 15 miles on my new Trek 930 mountain bike. I have long 

since resumed a full schedule, including directing an inpatient behavioral treatment unit, 

consulting to group homes and schools, evaluating and treating children in a group psychiatric 

practice, lecturing at the local community colleges, and serving as president of my sons' school. 

Twice each month I receive Ceredase in a chemotherapy room with people who have active 

malignancies. And I'm relieved that I had a tumor in a part of my body that could be removed and 

then be mechanically replaced. With each drip of my Ceredase I know that my risk of future 

Gaucher Disease complications is that much lower. And forty-two months after diagnosis with a 

stage-3 hemangioendothelial sarcoma associated with a Gaucher Disease bone infarction, I have no 

sign of any cancer.

My Gaucher Disease story is worse than many, and better than some. But I have no exclusive 

franchise on complications, hardship, or pain. Each person affected either directly or indirectly by 

Gaucher Disease has his or her own story to tell, and a unique battle to fight. In ancient Israel, 

soldiers would march into battle saying to their comrades, "Be strong, be strong; and let's 

strengthen each other." We need to enter our own battles with this same mutual support. After all, 

we're family. 

Reference: MR Pins, HJ Mankin, RJ Xavier, DI Rosenthal, GR Dickersin, and AE Rosenberg. Malignant 

epithelioid hemangioendothelioma of the tibia associated with a bone infarct in a patient who had Gaucher disease. 

A case report 

J Bone Joint Surg Am 1995 77: 777-781. 

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CARE CORNER 

by Barbara Lichtenstein 

National Gaucher Care Foundation, Program Director 

The first quarter of 1996 has already come to a close and the CARE and CARE+PLUS Programs 

have been very successful. Did you know that in the first quarter of 1996: 

*The CARE Program assisted 26 Gaucher patients with grants of approximately $40,000! 

*The CARE+PLUS Program assisted 7 patients with grants of approximately $16,000! 

These two Programs have been assisting Gaucher patients for over 3 years now and will continue 

to do so in the future. Throughout the past 3 years, there have been many thank-you's to the Board 

and the Foundation for providing these two programs. The following letters were written by 

appreciative Gaucher patients. 

Remember, the Care Program helps Gaucher patients pay for insurance premiums and the 

CARE+PLUS Program helps Gaucher patients pay for other Gaucher related expenses such as 

infusion costs and travel expenses for Gaucher evaluations. So, if you need help with any of these 

expenses, please call for more information 1 (800) 925-8885.


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DEAR DOCTOR 

Robin Ely Berman, M.D. 

National Gaucher Foundation 

Dear Doctor: 

I have heard that some people using enzyme replacement therapy have been able to use much lower 

doses to control symptoms. Every time my daughter’s doctor has tried to use much lower doses she starts 

to get more anemic, tired or her abdomen swells up again. What is going on with her? 

Dear concerned parent: 

While it is true that a certain number of individuals on enzyme replacement therapy are able to use very 

low doses (either at higher or lower frequency), there remain a significant number of persons who cannot 

go below a given dose or else they develop return of symptoms. This often appears to be correlated with 

the clinical severity of the person before beginning therapy. Physicians need to be vigilant about 

monitoring patients carefully both with clinical observation and laboratory testing while attempting to 

lower enzyme dosages. 

Dr. Robin Ely Berman, our Medical Director, will answer questions of general medical interest that 

deal with Gaucher Disease. All such inquiries should be sent to Foundation headquarters. 


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IF NOT US, WHO? 

IF NOT NOW, WHEN? 

FDA Reform: A Patient’s Perspective

y Lenny Van Pelt 

International Patient Advocacy Association 

For many patients like myself, recovery from a life-threatening disease would have been impossible had 

a New Deal-era government agency not existed to ensure that new drugs are safe and effective. Over the 

years, the U.S. Food and Drug Administration (FDA) has compiled an impressive record of service. But 

as times and resources change, the FDA must change too. 

In 1995, the FDA approved 28 new drugs and two vaccines, including valuable advances against 

osteoporosis, Lou Gehrig’s disease, cancer, diabetes and heart disease. I have learned as a patient 

advocate that the average review time for 28 drugs was 15.6 years. According to a Tufts University 

Study, 18 of the 28 new drugs approved in 1995 were first approved outside of the United States. As a 

patient with Gaucher Disease, I am very fortunate to have a drug that was approved in the U.S. first in 

April 1991. At International Patient Advocacy Association, it is our goal to change this FDA approval 

process to be more efficient for patients who suffer from other illnesses. 

It is interesting to note that a drug discovered today will be at your local pharmacy in the year 2007...if 

you are lucky. During that same period, your daughter or son who is in the first grade will be just ready 

to graduate from high school and ready to enter college. If this long process is due to the safety of the 

drug, I can understand this. If this long process is due to bureaucracy in the FDA, it needs to be changed. 

My last visit to Washington, D.C. to advocate for FDA reform was March 25, 1996 and I could feel a 

difference "on the hill." I hope that the members of the U.S. Congress will remember my arguments and 

take action for FDA reform not because it is politically correct, but because it will save the lives of 

thousands of my fellow patients. 

Upcoming Activities from the International Patient Advocacy Association 

⇒ Passage of Disclosure Bills - Washington State, 1996. 

⇒ AlphaOne Antitrypsin National Conference - May 4-5, 1996, Bloomington, Minnesota. 

⇒ National Society of Genetic Counselors - National Conference, October 26-29, 1996, San Francisco, 

California. 


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SHIP AHOY 

by Joanne French 

Lakewood, New Jersey 

Sometimes life is bittersweet. Bitter is living with Gaucher Disease; sweet is the potential positive aspect 

of Ceredase® -Cerezyme infusions. Pictured are Joanne French (left) and Ruth, new-found friends 

receiving their bi-weekly infusions, making the best of a serious procedure. 

Our visits to the Special Procedure Department at Kimball Medical Center, Lakewood, New Jersey have 

created a network of friends with the nursing staff, as well as with other Gaucher patients. An idea 

blossomed one day from nurse, Addie Haynes. We looked as though we were enjoying ourselves, 

chatting away, tan and in hot weather attire, while our I.V. lines delivered our infusions. Why not stage a 

cruise ship picture showing us relaxing with a beverage, reading the Gaucher Newsletter, visors against 

the sun! What fun it was pretending! Search and you will find some humor in most of life’s situations. 

Spirit and body go hand in hand. Sharing with understanding help the "medicine go down, with a 

spoonful of sugar." At Kimball Medical Center, the nurses are MARY POPPINS! 

Bye for now - 

Joanne 


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MOVEMENTS FOR LIFE 

by Suzanne Krupskas, 

Cranbury, New Jersey

Spring has finally arrived and summer is not too far behind. So let’s start exercising together. I’m your 

coach and in each issue you will see a series of exercises for toning, flexibility, strengthening, and 

endurance. 

Remember, none of my exercises should cause pain. If there is pain involved, please stop the particular 

exercise. 

Before starting any exercise program, you must get checked by your physician. 

The following are strengthening exercises. They can be performed daily or every other day. 

1) ARM RAISES: This exercise tones and strengthens the postural muscles. It helps to develop the 

muscles to make us stand straighter. 

Procedure: Stand with your legs apart (shoulder width), arms raised by your sides, slowly raise your arm 

90 degrees from the body and a 45 degree angle from chest, maintain your thumbs up. As you slowly 

raise your arms exhale, then as you slowly lower your arms slowly inhale. Repeat 10 times. 

Note: Do not raise any higher than shoulder height. If you are a beginner do not use any weights, then 

gradually proceed to 1 to 5 lb. 

2) ELBOW KICKS: This exercise tones and strengthens the back of the upper arms. 

Procedure: Lean over on a table or counter, your opposite arm is maintained by your side with your 

elbow slightly bent, make certain that your upper arm is braced against your body throughout the 

exercise, slowly straighten your elbow as you exhale, (point the thumb downward), hold position for 3 

seconds, then return to starting position as you slowly inhale. Repeat 10 times with each arm. 

Note: Do not thrust the arm back, the movement is performed slowly and with control. If you are a 

beginner do not use any weights, then gradually proceed to 1 to 5 lb. 

3) BRIDGING: This exercises tones and strengthens the buttocks, lower back, and thighs. 

Procedure: Lie on back on floor or bed, knees bent, feet and knees 4 to 6 inches apart, arms by your 

sides, slowly raise your buttocks up to 4 to 6 inches off the bed or floor, squeeze the buttocks together 

holding for 3 seconds as you exhale, then slowly lower to starting position as you inhale. Repeat 10 

times. 

Note: Do not thrust the buttocks up, the movement is performed slowly and with control.

4) MODIFIED SIT-UP: This exercise tones and strengthens the abdominals. 

Procedure: Lie on back on floor or bed, knees bent, feet and knees 4 to 6 inches apart, fold arms across 

chest, slowly raise your head and shoulder aiming towards the ceiling as you exhale, hold position for 3 

seconds then slowly lower as you inhale. Repeat 10 times. 

Note: The advanced modified sit-up is placing your hands behind your head, same procedure as 

description above. 

Remember, do not pull or jerk your head up. All the movement is slow, controlled and felt only in your 

abdominals and NOT in your neck. 


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FORMATION OF PATIENT SUPPORT GROUPS 

by Rhonda P. Buyers 

National Gaucher Foundation, Executive Director 

Several people in various parts of the country have asked about starting support groups in their areas. We 

would like to assure all of you who wish to start a support group that the NGF national office can assist 

in a number of ways: 

- Mailing of an initial personal introduction letter to everyone on our mailing list in a particular area; 

- Helping set up an initial meeting for persons who are interested in becoming part of the support group; 

- Helping locate speakers for meetings; 

- Mailings of future meeting notices; 

- Posting meetings on the Internet; 

Please be assured that we will be with you every step of the way. These groups can be set up in such a 

way that one person is not overwhelmed by various tasks. Mostly, it just takes a person who will say, "I'll 

be the main contact and take responsibility".

We welcome support groups, as we feel it is the best way for the Gaucher community to come together in 

an informal manner to discuss issues, problems, challenges, and victories. It's truly a time for sharing and 

caring. 

For information or questions, please call the NGF at 1-800-925-8885. 


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Gaucher Disease Articles, Publications, and Resources 

Allogeneic Bone Marrow Transplantation for Lysosomal Storage Disease. The European Group for Bone Marrow 

Transplantation. Authors: Hoogerbrugge PM, Brouwer OF, Brodigoni P, et al. Date: June 3, 1995 

Publication: Lancet. 

Enzyme Replacement Therapy for Gaucher Disease: Skeletal Responses to Macrophage-Targeted 

Glucocerebrosidase. Authors: Rosenthal D, Doppelt S, Mankin H, et al. Date: October 1995. 

Publication: Pediatrics. 

Gaucher Disease: A Diagnosis, Evaluation and Treatment Summary. Published by Genzyme 

Therapeutics, this introduction to Gaucher Disease is designed to introduce physicians to Gaucher 

Disease, its symptomatology, diagnosis, evaluation and treatment. Physicians may receive copies of 

this pamphlet, a list of other physicians treating Gaucher patients, more information on existing 

treatment protocols, and the International Collaborative Gaucher Group Registry program by 

contacting Genzyme Therapeutics at 1-800-745-4447. 

Gaucher Disease, Hematologic, Skeletal, Visceral, and Biochemical Effects: Current 

Understanding, Recent Advance, and Future Directions. Editors: Miescher P, Jeffe E. Authors 

include Duursma S, Incerti C, Aerts J, Rademakers R, Pastores G, Belmatoug N, Zaizov R, and 

Cox T. Date: July 1995; Publication: Supplement to Seminars in Hematology. 

Gaucher Disease in Spanish Patients: Analysis of Eight Mutations. Authors: cormand B, Vilagelia 

L, Burguera JM, et al. Date: 1995 Publication: Human Mutations. 

Gaucher Disease -- the Orthopaedic Aspect. Report of Seven Cases. Authors: Tauber C, Tauber T; 

Date: 1995; Publication: Arch Orthop Trauma Surg. 

Gynecologic and Obstetric Aspects of Gaucher’s Disease: A Survey of 53 Patients. Authors: 

Granovsky-Grisaru S, Aboulafia Y, Diamant YZ and others; Date: April 1995; Publication:

American Journal of Obstetrics and Gynecology. 

Identification of a New Mutation (P 178S) in an African-American Patient with Type 2 Gaucher 

Disease. Authors: Choy FYM, Wei C; Date: 1995 Publication: Human Mutation, vol. 5, pp. 345- 

347. 

Long-Term Expression of the Glucocerebrosidase Gene in Mouse and Human Hematopietic 

Progenitors. Authors: Nimgaonkar M, Bahnson A, Kemp A, et al. Date: October 1995; 

Publication: Leukemia. 

MR Imaging of Patients with Type 1 Gaucher’s Disease: Relationship between Bone and Visceral 

Changes. Authors: Terk MR, Esplin J, Lee K and others; Date: September 1995; Publication: AJR 

Am J Roentgenol. 

Pathological Findings in Gaucher Disease Type 2 Patients Following Enzyme Therapy. Authors: 

Bove KE, Daugherty C, Grabowski GA; Date: September 1995; Publication: Human Pathology. 

Recent Advances in Diagnosis and Therapy in Gaucher Disease. Authors: Elstein D, Zimran A; 

Date: August 1995; Publication: Israel Journal of Medical Science. 

Replacement Therapy with Imiglucerase for Type I Gaucher’s Disease. Authors: Zimran A, 

Elstein D, Levy-Lahad E and others; Date: June 10, 1995; Publication: Lancet. 

Resolution of a Proximal Humeral Defect in Type I Gaucher Disease by Enzyme Replacement 

Therapy. Authors: Pastores GM, Hermann G, Norton K, Desnick RJ; Date: 1995; Publication: 

Pediatric Radiology. 

Skeletal Manifestations of Gaucher Disease: Diagnosis, Evaluation and Treatment. Published by 

Genzyme Therapeutics, this monograph and accompanying slide series reviews the present 

understanding of the pathophysiology of Gaucher bone disease and its clinical complications, with 

particular emphasis on currently available imaging techniques for the early diagnosis and effective 

monitoring. 

Ten Years Experience of Bone Marrow Transplantation for Gaucher Disease. Authors: Ringden 

O, Groth CG, Erikson A, et al. Date: March 1995; Publication: Transplantation. 

Transtrochanteric Anterior Rotational Osteotomy for Gaucher’s Disease. A Case Report. Authors: 

Iwase T, Hasegawa Y, Iwata H; Date: August 1995; Publication: Clinical Orthoplasty. 


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"WHAT EVERY FAMILY SHOULD KNOW" 

TAY-SACHS/GAUCHER JOINT CONFERENCE 

This "first of a kind" conference, which was originally scheduled to take place on June 2, 1996, in 

Waltham, MA, has been postponed until early fall. When we have confirmed the exact date, we will give 

you the updated information. 

We thought you might like to have some information about what the conference will include, and have 

given a brief outline below: 

- Clinical overview of Gaucher Disease, Tay-Sachs 

and Canavan's Diseases 

- Personal stories from individuals/families 

affected with the above diseases 

- Carrier/Diagnostic screening 

- Ethical issues, including privacy and genetic 

discrimination 

- Social issues 

- Discussion regarding breast cancer 

- Panel discussion 

Our goal in holding this conference is to educate the Jewish community about the risks of Gaucher, Tay- 

Sachs and Canavan's diseases; all of which are more common amongst Jews of Ashkenazic (Eastern 

European) descent. The conference will also explore the ethical implications of genetic testing and 

broader issues of accessibility of genetic information


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CHAPTER and SUPPORT GROUP MEETINGS 

by Christina L. Thomas 

National Gaucher Foundation, Director of Programs 

ALBANY, New York 

Many thanks to Linda Feinman, a Gaucher patient, who organized the first patient support group 

meeting on Saturday, April 6. The meeting was informal and area patients had the opportunity to 

get to know one another and determine what direction they would like the group to take. 

The group’s next meeting will take place on June 13 and Dr. John Barranger of the University of 

Pittsburgh will the featured speaker. 

You may contact Linda Feinman directly at 518-438-5525 if you would like to be a part of this 

exciting beginning. 

ATLANTA, Georgia 

On Sunday, April 28th at 2:00 pm the Emory Gaucher Center will be hosting patients, their 

families and the medical community to hear Dr. Scott Furbish, Associate Director of Technical 

Education, of Genzyme Therapeutics deliver a talk on "Cerezyme Recombinant Enzyme 

Replacement Therapy". Afterwards, Dr. Louis J. Elsas, Director, Division of Medical Genetics and 

the Emory Gaucher Clinic and Karen A. Grinzaid, Emory Gaucher Center Coordinator, will 

present their latest findings from the study "Emory’s Ceredase Dose Response Study" which was 

recently conducted. Margaret Galvez, Case Management Specialist with the Patient Assistance 

Program at Genzyme, will discuss "The Changing World of Health Care". 

If you would like to be a part of this extremely informative meeting, please contact Karen Grinzaid 

at 1-800-200-1524. 

BOSTON, Massachusetts 

Over 70 patients, family members and others gathered for a tour of Genzyme Corporation’s new

Cerezyme manufacturing plant in Allston, Massachusetts on Sunday, March 10. After a buffet 

lunch, tours were conducted through the plant. Afterwards Dr. Mankin, Chief of Orthopedics at 

Massachusetts General Hospital, presented an extremely interesting and informative lecture on 

Gaucher Disease and bone involvement. The audience then had the opportunity to ask Dr. Mankin 

and a Genzyme representative questions. Many patients commented that both the lecture and the 

tour of the plant were extremely informative. Many thanks to Linda Rubenstein who was 

instrumental in organizing this day. 

CHICAGO, Illinois 

The Chicago Chapter has had a very busy winter holding a major contributions campaign and 

raising over $13,000 The chapter wrote to friends and businesses asking for donations in this 

hugely successful fund-raiser. Fred and Robin Sonenshein were honored at the chapter’s February 

meeting for their tireless effort and committed participation. In addition, the chapter has 

continued their annual entertainment book fund-raiser as well as hosting Dr. Gregory Grabowski 

of Children’s Hospital in Cincinnati, Ohio. Our thanks go out to this entire chapter for their 

dedication and support. 

The Chicago Chapter will also be meeting on Tuesday, April 23rd and again on Tuesday, May 

28th. Both meetings will begin at 7:30 at Rush North Shore Hospital and Rhonda Buyers will be 

speaking at the May meeting. 

DELAWARE VALLEY (Philadelphia, Pennsylvania and surrounding areas) 

The Delaware Valley Chapter is busy planning their first Golf Outing on August 1 at Edgmont 

Golf Club. In order for this to be a successful event, the chapter needs your help. If you are in the 

area and would like to help with the planning of the day of the outing, please contact the NGF and 

we’ll put you in touch with the Chapter. 

On December 10, 1995 the Chapter also had the opportunity to hear Dr. Furbish, of the Genzyme 

Corporation, speak about Cerezyme Enzyme Replacement Therapy. Chapter members then had 

the opportunity to ask questions. Chapter members commented that it was an excellent chance to 

have their questions answered. 

HARRISBURG, Pennsylvania 

On May 28th, Chapter President, Jeanne Rogal will deliver an informational talk on Gaucher 

Disease to the Penn Central Chapter of the Intravenous Nurse Society in Harrisburg, 

Pennsylvania. 

LOS ANGELES, California 

The Los Angeles Chapter will be meeting Thursday, May 16 at The Olympic Collection in West 

Los Angeles. A complimentary reception and buffet dinner will begin at 6:00 pm followed by 

presentations by Dr. John Barranger and Erin Rice, both of the University of Pittsburgh.

PHOENIX, Arizona 

The Arizona Chapter of the National Gaucher Foundation will be hosting a Patient Advocacy 

Meeting on Wednesday, May 15 at the Fountain Suites Hotel in Phoenix, Arizona. Special guest 

speakers include Dr. John Barranger who will present the topic: "Gene Therapy Approaches to 

Gaucher Disease" and Erin Rice who will speak on the "Molecular Diagnosis of Gaucher Disease." 

A complimentary reception and buffet dinner will be served. The meeting begins at 6:00pm. 

Contact the NGF for more information. 

SAN FRANCISCO, California 

On Tuesday, April 2, the University of California, San Francisco Gaucher Disease Referral Center, 

the NGF and the International Patient Advocacy Association sponsored a Gaucher Patient 

Advocacy Meeting. Featured guest speaker was Dr. John Barranger, Professor, Department of 

Human Genetics, Molecular Genetics and Biochemistry and Pediatrics of the University of 

Pittsburgh. Dr. Barranger delivered the presentation "Toward Gene Therapy: A Future Approach 

to Gaucher Disease." Julie Kurnitz, Humor Specialist and Workshop Coordinator, then spoke on 

"Humor, Creativity & Chronic Illness". 

SEATTLE, Washington 

On Saturday, May 11 the Washington Gaucher Disease Referral Center, the NGF, and the 

International Patient Advocacy Association (IPAA) are co-sponsoring a Gaucher Patient Advocacy 

Meeting to be held at the University of Washington. Dr. C. Ron Scott, Professor of Genetics at the 

University of Washington, will be the featured speaker along with Julie Kurnitz, Humor Specialist 

and Workshop Coordinator who will present "Humor, Creativity & Chronic Illness". 

WASHINGTON, DC (our nation’s capital!) 

Get in the closet and dust off those golf clubs. It’s that time of year again. The NGF staff is busy 

planning for our biggest fund-raiser of the year: our annual golf tournament. This year’s event will 

be held Friday, September 6 at Turf Valley Hotel and Country Club in Ellicott City, Maryland. 

Ronnie Mervis, of Mervis Diamond Importers, is back as our Tournament Chairman and 

Founding Sponsor. For more information contact the NGF office at 1-800-925-8885. 

For more information about any of these meetings or how to form a chapter or support group in your 

area, please contact the NGF at 1-800-925-8885. 


s s s s s s 

NGF ACCEPTED BY 

INDEPENDENT CHARITIES

If you give at the office, look for the 

National Gaucher Foundation!!! 

The NGF has been accepted by Independent Charities of America as a charity designee in the 1996/97 

Combined Federal Campaign (CFC), which includes various states nationwide. The Partner Federation 

under which the NGF is listed in the CFC brochure is HEALTH CHARITIES OF AMERICA. 

Created in 1988 Independent Charities of America (ICA) raises money for over 450 non-profit 

organizations nationwide, including art, environmental and women’s groups. Most donations result from 

on-the-job campaigns, which allow employees to make cash contributions as well as donations through 

payroll deductions. 

Look for the National Gaucher Foundation next time you’re approached at the office for charitable 

contributions. Our 25 word staff statement is as follows: 

"The most common Jewish genetic disorder, more common than Tay-Sachs, often misdiagnosed, 

treatable when discovered. Help find a cure, educate doctors, and help those afflicted." 

For more information contact the NGF at 1-800-925-8885. 


s s s s s s 

Good-bye to a Friend of the Gaucher Community 


Norwich, Connecticut

George Rosenfield died on January 21, 1996, about two months before his seventieth birthday, and less 

than a half year after learning that he had a metastatic carcinoma. He had a number of titles: Master of 

his Masonic lodge, president of his synagogue, officer of the Shrine, among others. He most liked to be 

known, however, as Dad, Grampa, and as a friend to those with Gaucher Disease. 

My Dad's involvement with Gaucher Disease began in 1968, when I had some very unfortunate 

complications, and a diagnosis which was an enigma even for the medical community. My parents 

brought me to Dr. Henry Mankin at the Hospital for Joint Diseases, in New York, then one of the very 

few practitioners who knew anything at all about Gaucher Disease. Back home in Massachusetts, my 

father and I went to the library to find whatever information we could. The textbook references were of 

little help, with impossible words like "sphingolipidose" and "hepatosplenomegaly." There was no way 

to find lucid, understandable information, and I remember the pain on my parents' faces. Years later, in 

1989, we attended the first convention of the National Gaucher Foundation, in Bethesda, Maryland. The 

availability of information was much better by then, and we were wide-eyed to learn about a therapy that 

would be more than palliative. 

Returning home, Dad gave a parent's perspective during an on-camera interview for a local television 

news program, and helped to make the first Ceredase infusion in Western Massachusetts a notable event. 

He was known to actively organize blood and bone-marrow donor drives, and arranged for a carload of 

Shrine clowns to visit a sick child. But he performed some of his most conspicuous charity for the 

Shriners orthopedic and burns hospitals, and for people, like him, whose families were touched by 

Gaucher Disease. 

He modeled a life of good deeds, showing that, without degrees or academic titles, there is much good 

that one person can do. 

************************************************************************************ 

In Memory of Julia Gross 

by Lance Webb 

Genzyme Corporation, Clinical Service Associate 

The Gaucher community lost a dear friend recently. Julia Gross passed away on January 17, 1996. Julia 

was 74 years old. Julia is survived by her husband, Paul, of fifty-three years, and her two sisters, Hilda 

and Edith, along with several nieces and nephews whom Julia treated as her own children. Those of you 

who receive the Horizons magazine may remember Julia from the letter that she wrote in the very first

issue entitled, "Life Begins at Seventy." 

A native of New York City, Julia married Paul Gross, who was in the Coast Guard, in 1942. In 1948 

Julia and Paul moved to Corpus Christi, Texas where they operated a successful retail shoe business until 

retiring. They celebrated their 50th wedding anniversary on December 13, 1992 with a large reception 

for their friends and family. 

Like many others who have Gaucher Disease, Julia had to live with the symptoms that often caused pain 

and fatigue but you would never know that Julia was suffering because she always had a smile on her 

face and a warm greeting for everyone that she met. Although childless, Julia treated her many nieces 

and nephews - and even new acquaintances - as though they were her own children or grandchildren. 

Julia’s optimism in the face of her lifelong disease can serve as an inspiration to all who have Gaucher 

Disease or any chronic condition. Julia will be missed by all of us who knew her, but our fond memories 

of Julia will always live on in our hearts and minds. 


s s s s s s 

Update on Recent Lobbying Activities 

We would like to thank all of you who contacted your United States Senators on behalf of the Jeffords 

Amendment to raise the lifetime cap on health insurance to $10 million dollars. 

The Jeffords Amendment was introduced on the floor of the Senate on Thursday, April 18, 1996 and 

unfortunately was voted down by a count of 56 to 42. However, we have not given up on our 

commitment on this much needed piece of legislation. We hope that the amendment can be introduced to 

another committee and attached onto another piece of legislation. 

The NGF was successful along with other patient advocacy groups in forming a coalition that raised 

awareness to the general public on the plight of individuals and their families who face these concerns 

every day of their lives. 

We will keep you updated on any future activities and again want to thank you for taking time out of 

your busy schedules to voice your support for such an important issue. 


s s s s s s

INTERNET FOR GAUCHERNIANS 


Norwich, Connecticut 

Although there is considerable media attention paid to the Internet, the statistics indicate that most people 

are not connected at all. And I will venture to say that most people are overwhelmed by the idea of using 

home computers and tying into this "other world." I will direct these comments, then, to those who are 

not involved with the Internet, and may not even have a computer. My explanation will, I hope, be 

devoid of jargon, and I won't assume any prior experience with computers. 

What is the Internet? 

The Internet is the name given to the way that computers around the world can connect to each other. 

Any number of computers can be connected at one time (Well, I suppose there has to be at least TWO!), 

and they can be any make or model. The computers can be virtually any place where they can be reached 

by a radio signal or a wire. But rather than being connected the way telephones are connected (i.e. one 

phone to another phone), computers on the Net are connected like a massive, worldwide party-line. 

(Does the phone company even offer party lines anymore?) All sorts of information is buzzing over the 

Net all the time, but your computer only receives what it's intended to receive. Just like at a cocktail 

party, you only hear the part of the conversation that you want to hear. 

What is E-Mail? 

Electronic Mail, or E-Mail, is a way that messages or other information can be sent from one computer to 

another. E-mail is like a combination of an office memo and a telegram. Of course, e-mail can be like a 

short note from one person to another. But it's also possible to attach other types of computer files to email 

messages, such as sounds, pictures, movies, data, or computer programs. 

What is the World Wide Web? 

The World Wide Web is another one of the ways that communication can take place between computers 

on the Internet. Imagine that the world is a giant library. All of the world's information would then be on 

the pages of the books in that library. To find out about stuff, you would open a book and browse through 

its pages. That's just what we do on the Web: A person looking for information types an address into a 

computer program known as a "browser". When the person's computer calls that address, what appears 

on the screen are the contents of that particular "Web page." If the address 

http://q.continuum.net/~wrosen/gaucher.html

is typed into a browser, the Gaucher Disease Homepage appears, complete with a picture of Dr. Gaucher 

and all sorts of information about Gaucher Disease. 

That's it? 

Well, not quite. Some of the words on the Gaucher Disease Homepage are in color. If the computer user 

points the mouse to the colored text and clicks on it, the browser will be directed to another, different, 

page. For example, if the mouse were to be pointed to the text that says "MGH Gaucher Center" and 

clicked, the screen will show the page for the MGH Gaucher Center. Within the MGH Gaucher Center's 

page are even more examples of colored text, which link, in turn, to even more interesting pages. The 

pages on the World Wide Web are linked together in this way, allowing the user to browse through 

interconnected (and presumably related) pages of information. The World Wide Web provides a pointand-click 

method for accessing a vast quantity of interconnected information. 

How are Gaucher People connected to each other on the Internet? 

If you know a person's e-mail address, it is a simple matter to drop 

him or her a note. For example, my e-mail address is 

wrosen@q.continuum.net 

This means that my user name is "wrosen" at a computer named "q" at a company called Continuum. 

That company is a computer networking firm, and so my Internet address ends with "net". Some Internet 

e-mail addresses are longer and some are shorter. It is absolutely essential that the address be typed 

exactly. Even one misplaced or incorrect character will confuse the computers on the Internet and your email 

will go nowhere. (Fortunately, you will get some kind of error message back from the Internet if 

your message can't be delivered.) 

What if I don't know a person's e-mail address? 

There are at least two e-mail discussion lists for people interested in Gaucher Disease who are trying to 

connect with each other. 

What is an e-mail discussion list? 

An e-mail discussion list (which also goes by the name listserver, or listprocessor) is a free service that 

someone with an e-mail address subscribes to. Whenever a message is sent to the listserver's address, the 

central computer then sends the message out to everyone who is subscribed to the list. 

Please give me an example.

There is a listserver for discussion of all of the genetic diseases that occur more frequently among Jewish 

people. A person would send an e-mail message to the address 

listserv@sjuvm.stjohns.edu 

But instead of writing a note, in the place for the message the person would type 

subscribe GenDisease-J HIS or HER NAME 

Then, and this is the really cool part, any e-mail sent to the address 

GenDisease-J@sjuvm.stjohns.edu 

would be sent to all of the list's subscribers around the world. There are about 200 people subscribed to 

this discussion list, including many people with, or interested in, Gaucher Disease. 

Are there other listservers? 

Yes. There is another Gaucher Disease listserver, and there is another listserver for all of the inborn 

errors of metabolism. There are other listservers on the Internet for just about every subject 

imaginable. At the present time, most of the Gaucher people that I know who have e-mail addresses, are 

subscribed to the Genetic-Disease List. 

What kind of equipment do I need to own in order to connect to the Internet? 

It is necessary to have a computer with a modem. A modem is the part of the computer that allows it to 

talk to other computers. The modem part of the computer is where you plug in the phone line, so of 

course it will be necessary to have a phone jack nearby. 

O.K., I have the computer. Now what? 

You must sign on to some company or service that will connect your computer to the Internet. The 

easiest way to do this is to get the computer programs (called "software") for one of the big on-line 

services. You've probably heard of America Online, Prodigy, CompuServe, or maybe 

some others. They each have toll-free numbers that you can call to request free software, and they'll 

almost certainly throw in a few hours of free time. 

Are the on-line services all about the same?

There are differences between the services with regard to how easy they are to use, and to some extent, 

the type of services they provide. I've tried them all, and I think that America Online and Prodigy are the 

most intuitively easy on-line services to use. Other people have different opinions and preferences. All of 

the services offer e-mail and built-in browsers for the World Wide Web. You can't go too far wrong by 

picking one, trying it for a month, and switching to another one if you don't like it. All of the services 

offer on-line help. That is, you send e-mail to the service's helper-types, and they walk you through 

whatever you're trying to do. They also have toll-free technical support lines which, frankly, tend to get 

jammed up, especially during the evenings. 

What's the catch? 

It's fun and incredibly interesting. You'll enter a "virtual world" where you're in contact with people with 

concerns and interests the same as yours. You will access more information than you knew you could. 

You may need someone to tell you to turn the darn thing off already and get some sleep! 

What does this cost? 

The market for Internet access is becoming very competitive. The major on-line services typically charge 

around $10 per month for 4-5 hours of on-line time. Additional time is usually around $3 per hour. Once 

you get more familiar with all of this, there are ways of receiving and sending a whole day's worth of email 

in a few minutes, which is a useful skill if you're on an on-line service that charges by the hour. 

Too much. I want it cheaper. 

There are a large number of local Internet providers springing up around the U.S. It is possible to get a 

flat rate of about $20 or less per month for unlimited access. The disadvantage of such services is that 

they are harder to use and there may not be much of a technical support department. I recommend getting 

familiar with the Internet with a major on-line service, and then "graduating" to a cheaper local service 

when you're more confident. 

How can I access the Internet for free? 

Many people have Internet access, at least for e-mail, through a university, corporation, government 

agency, or military facility. 

What should I do on the Internet once I get there? 

Send a note to Christina Thomas at the National Gaucher Foundation. 

Christina's e-mail address is:

cthomas26@aol.com 

Then, check out the Gaucher Disease Homepage. Address your browser to 

http://q.continuum.net/~wrosen/gaucher.html 

Welcome To Cyberspace! 


s s s s s s 

OVER STOCKED ITEMS!!!!!!!! 

CLEARANCE*********DISCOUNTED PRICES 

ORDER NOW AND BE PREPARED FOR THE HOLIDAYS! 

WITH CARDS THIS BEAUTIFUL, WHO NEEDS PRESENTS? Order now or else these beautiful 

cards will be completely sold out. For a limited time you will receive 30 cards and envelopes exclusively 

designed for the National Gaucher Foundation. 5" X 7". 

$10.00. 

Chanukah greeting: "May your spirits soar this holiday season." 

Joy greeting: "Let the spirit of the holiday season carry you away." 

________________________________________________________________________ 

DEBORAH FREISER is not only a gifted artist, she’s also a Gaucher patient. Her work has won 

numerous awards and has appeared on film and television, most notably on Magnum P.I. Currently, she’s 

working as a staff artist and teacher at the Los Angeles Museum of Science and Industry in the Creative 

Computer Program. 

" - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 

PAYMENT METHOD

Please enclose your personal check, money order, or charge card information below. (No cash please.) 

Make checks payable to: 

NGF 

...Check...Money Order...Mastercard...Visa 

CARD ACCOUNT NUMBER: 

Expiration date: 

Signature of authorized buyer 

Please send to : 

National Gaucher Foundation 

11140 Rockville Pike, Suite 350 

Rockville, MD 20852 

To place an order by phone call 1-800-925-8885 


s s s s s s 

Cerezyme Update 

Michael Raab 

Product Manager, Ceredase® & Cerezyme® 

Genzyme Therapeutics Corporation 

Genzyme has been experiencing periodic shortages since Cerezyme received market approval for moderate to severe type 

1 Gaucher disease from the US Food and Drug Administration (FDA) in 1994. To begin with, we apologize for any 

inconvenience or anxiety this has caused patients. We recognize the challenges this unfortunate situation creates for 

everyone involved. 

To provide an understanding of the situation, I want to review what has occurred and our plans moving forward. There are 

several reasons for the temporary shortages we are experiencing with Cerezyme. 

Currently, the product is manufactured in a small scale facility in Framingham, Massachusetts and produces relatively little 

enzyme. Our goal is to supply all patients who require enzyme replacement therapy with Cerezyme.

Recognizing that supply of Ceredase is limited by placental collection and that Cerezyme from the small scale process 

would be insufficient, we began construction of a state-of-the-art facility to enable us to produce enough Cerezyme to meet 

all patients' needs. 

Ultimately, this facility in Allston, Massachusetts, once approved by the FDA and at full scale production, will eliminate 

all shortages. We anticipate approval of the facility sometime late in 1996 or early 1997. In the meantime, we will continue 

to do everything we can to minimize the impact of these shortages. 

Again, our sincere apologies for the inconvenience and difficulties the shortages have caused. If you have any questions, 

please do not hesitate to give me a call at 617-252-7740. 


s s s s s s 

IN HONOR OF: 

Daisy Glickman by Zelda Ozlek 

James H. Reefer 

Sam White by M/M Hale Porter 

Kimberly Dixon & Glenn Morrison by Jane Lessner 

Robert Allen Rogal by Deborah Rogal 

Steve Goodman by M/M Myron Bortnicker 

Linda Rubinstein by Caren Arnstein 

Rachael Fleischmann by Stephanie Dorman 

Louise Glickman by M/M Jimmy Heymann 

Stephen Sontheimer by M/M Jimmy Heymann 

Gert & Larry Jaffe by M/M Steve Jaffe 

SPECIAL CONTRIBUTIONS 

10/26/95-3/12/96

M/M Arthur Hoffheimer, Jr. by Arthur Stern 

Maria Fisher by M/M James Cavall 

Laura Glickman by M/M Michael Fontham 

Sharleen Cooper Cohen by Sandra Kraus 

Edythe Schuster by Jean Ratner 

Aaron Molzon by M/M Ray Van Amburg 

Joseph Levine by Marion Levine 

Merril Steibel by Allan Gooderum 

Bernard & Clara Kaliner by D/M Larry Kaliner 

Carol Lees and Nancy Colon by D/M Isidore Sheps 

Dr. Hurwitz by Charlotte Zubusky 

Ned Levy by Keith Hark 

Caryn & Fred Bark by Nancy Goodman 

Karen Mervis by M/M Sol Broder 

Kartan Mailender by M/M Bud Hoffheimer 

Jared Liebenau by Gertrude Ginsberg 

Harry Zvi Landau by M/M Sam Joachim 

Isha Tohill by Judith Komor 

Daniel Taylor by M/M Allen Taylor 

Myra Kolodny 

Shirley and Walter Director

Helen and Ed Kroop 

Carol and Howard Landis 

Sally and Marty Rosenblum 

Roz and Arnie Schacknow 

Jess and Hal Seiden 

Elliot Kreigsman by M/M Leo Kreigsman 

Joshua Siders Stutz by M/M Stanford Stutz 

Adam & Danielle Meyerowitz by M/M Wayne Meyerowitz 

Carole Kushnir by Arthur Berger 

Suzanne Krupskas by M/M Milton Lichaw 

George Heldman, Edward Blatt by M/M Bud Hoffheimer 

M/M Jon Levinson by M/M Bud Hoffheimer 

Joshua Ben-Ami Meyerson by M/M Milton Silverman 

Rose Lynn Fisher by Freilichna Mishpocha Havarah 

IN MEMORY OF: 

Wayne Christensen by M/M David Gervich 

Bruce Katz by Charles Katz 

Chester Hawkins by Dr. Paul Gerber 

Alma Granoff by Dr. Paul Gerber

Robert Lebovic's father by Deborah Rogal 

Edith Gelford's mother by Deborah Rogal 

Barry Friedman's father by M/M David Hahn 

Leo, Sam & Nettie Jagendorf by Norma Jagendorf 

Gary Rabiner's brother-in-law by M/M Bud Hoffheimer 

Sandy Weinstein by M/M Bernard Evenchik 

Arlene Susan Goldman by Steven Goodman 

Charles E. Smith by M/M Henry Newhouse 

Lillian Lohman by M/M Maurice Feldman 

Isadore and Sylvia Shponka by Sam Shponka 

George Smulson by Eileen Freedman 

George Rosenfield by D/M Wayne Rosenfield 

Robert Feigan by M/M Laura Grossman 

Tena Karp by Julian Karp 

Sam Dubinsky by Hedda Levinson 

Reba Gerber by Helen Milliron 

Agnes Schoenberger by Sharon Bakin Stein 

Judy Feldman by Janet Hirshberg 

Ruth Lee Thal by Louise Feldman 

Emily Ann McDonald by M/M Edward Latacz 

Abraham Seidman by Carole Seidman Venor

Melvin Berman by 

M/M Richard Reff 

Carol Danish 

M/M Gary Buyers 

M/M Kurt Friend 

M/M Murray Kaye 

M/M Sheldon Magazine 

D/M John Barranger 

M/M Leo Cohen 

M/M Vincent Leahy 

M/M Stanley Rosin 

Pierre Cassidy 

M/M Eli Budd 

M/M Jack Benaroya 

Debra Hayden 

Herm Schnitz 

M/M Dominic Mannino 

Mrs. Louis Taubman 

Bernie & Betsy Lane 

Leo Buidman

Carol Plummer 

M/M Charles Heller 

Anita & Leo Jaffe 

M/M Raymond Klein 

M/M Charles Watt 

M/M Ralph Tash 

M/M Stanley Praver 

John Levy 

William Gingold 

M/M Lawrence Barnett 

M/M Daniel Melnick 

TMG Electric 

M/M Mario Dell'Orto 

M/M Robert Edwards 

M/M James Greenbaum 

M/M Charlie Eisen 

M/M Seymour Korn 

M/M David Brody 

M/M Morris Belzberg 

M/M Harold Bobys 

M/M Melvin Lippman

M/M Carl Levin 

Celia & Sandy Norian 

M/M Jim Adams 

M/M Samuel Stroum 

M/M Jack Gordon 

D/M Stanley Spund 

M/M Maurice Feldman 

M/M Arthur Howard 

Mr. Victor Shargai 

Mr. Joe Aniello, Jr. 

M/M David Bubes 

Mrs. Shirley Feld 

Mrs. Elaine White 

M/M Howard Cohen 

M/M Carl Grossman 

Bertha Arno 

M/M Harold Tivol 

M/M Julius Akman 

D/M Marvin Leaf 

George Brady

M/M Robert Fraiman 

D/M Melvin Carver 

D/M Benjamin Weinger 

M/M Martin Cohen 

M/M Marshall Wais 

M/M Allan Schulman 

M/M Kenneth Genender 

Dr. Shirley Kullen 

M/M Morgan Varon 

Ms. Christi Deck 

Mr. Jan Van Heek 

M/M William Aliski 

M/M Jerome Spector 

M/M Anthony Deering 

Rommie Davis & Associates 

Abe Cohen by M/M Dick Shulman 

Judith Light by M/M Jay Rogal 

Ruth Lee Weberman by M/M Jay Rogal 

Rubin Bakin by Sharon Bakin 

Bonnie Teres by Abbie Fried 

Emanuel Stein by Sally Shulman

CORRECTION 

Our last newsletter reported a donation made in memory of Harvey Rosner. The listing should have read "in honor of" 

from Mr. and Mrs. Milton Lichaw. We apologize for the misprint. 


s s s s s s 

THE NGF WANTS TO HEAR FROM YOU 

The NGF is dedicated to providing the Gaucher community with the information that is of most interest 

to you. Some of you may have received surveys in the mail asking for your views on the newsletter. 

Thanks for your responses. We are busy incorporating your ideas in future newsletters. 

If you have not received a survey and would like to express your ideas, please write, call, fax or e-mail 

the NGF. If there are any particular articles or topics you would like to see in the Gaucher Disease 

Newsletter please let us know. In future issues, regular articles will include patient profiles, research 

updates, recent publication lists, updates from the International Patient Advocacy Association and NGCF 

Care Program. We are also interested in forming a "letters to the editor" column. 

Please drop us a line and let us know what you would like to see in the newsletter. It is, after all, here to 

serve you. 

(Updated on July 3, 1996) 

Click on Dr. Gaucher to return to the Gaucher Disease Homepage. 

© 1999 by The National Gaucher Foundation

WAYNE'S (other) WORLD - National Gaucher Foundation

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