505 Northern Blvd., Great Neck, NY 11021 www.medhelp.org/nadf
(516) 487-4992 NADFmail@aol.com
VOL. XX, No. 2 • 2005
NATIONAL ADRENAL DISEASES FOUNDATION NON-PROFIT ORG.U.S. POSTAGE
PAID
PERMIT NO. 158
EAST ROCKAWAY, NY
®
Fellow NADF members, allow me to introduce myself.
My name is Tom LeMasters, and in July of this year our
organization’s Board of Directors elected me to serve as
President.
I come to this cause with a very personal stake: my two
boys, ages five and seven, have Congenital Adrenal
Hyperplasia. For those who may not know what this is, it
means, in layman’s terms, that their bodies do not produce
their stress or salt hormones, and in turn produce
excess testosterone. They must take medication twice
daily, and will continue to do so for the rest of their lives.
While these two young blessings in my life are happy and
healthy now, it was not always so.
My firstborn nearly died, undiagnosed, at two weeks
old, and illnesses during the first two years of both of my
boys’ lives resulted in numerous trips to urgent care centers
and emergency rooms. It was on one of these latenight
visits to the hospital that I decided to make it my
mission in life to help those with similar diseases and the
families who love them. This commitment led me to
become a member of NADF in 2003, and during that
year I volunteered to serve on the Board of Directors.
The reason I am giving you all a glimpse into my life
and my motivations is two-fold. First, I believe you
should understand the background of the man who is
serving at the helm of this great organization. Second, it
is my opinion that if you know the seriousness of my
motivation, you will in turn grasp the seriousness of my
words. Allow me, then, to turn to what I believe must be
NADF’s first priority in the near term: finances.
If NADF is to fulfill its purpose to be a support to
those who suffer from adrenal diseases and their families,
we must have the resources to do so effectively. Salaries,
printing bills, and insurance premiums are not paid by
good intentions. As you will read later in this newsletter,
your organization is at a crossroad. We need your help.
New volunteers have stepped forward in recent months
to help with grant-writing and website development. We
are taking steps to develop a strategy whereby NADF can
apply for and receive grants from other charitable groups,
and will soon embark on developing a strategic plan and
vision for the future. Your donations remain the financial
backbone of NADF, and we need them to keep the organization
moving. Your generous gift will be deeply and
sincerely appreciated.
You have all sacrificed time and money to help keep
NADF going. This is not lost on the organization’s leadership.
As we move forward together, I ask not merely for
your support, but also for your ideas. Remember: this is
your organization. It will go as far as you will allow it, and
on that there are no limits. Let us resolve together to take
the steps necessary to ensure that NADF’s future is even
brighter than its past.
God bless,
Tom LeMasters
President
National Adrenal Diseases Foundation
PRESIDENT’S MESSAGE
It’s official…Thomas LeMasters has been unanimously voted in as President of NADF by the NADF Board. Congratulations,
Thomas! And thank you for taking on this important position! Tom’s contact information is: lemasterspol@aol.com • (516) 487-4992
Best to all,
Melanie Wong, Executive Director
National Adrenal Diseases Foundation2
31, 2005)
3
PRINTED MATERIALS
PRICE LIST
Historically, National Adrenal Diseases Foundation
(NADF) has supplied copies of our various printed materials,
like educational pamphlets, newsletters, and emergency care
wallet cards, at no charge. Due to NADF’s current financial
situation, beyond the initial introduction package sent to
“new contacts” at no charge, there will be a cost-of-printing
charge, plus shipping, for all requested printed pieces.
Newsletters—$2.00 ea.
Addison’s Disease: The Facts You Need To Know—
$1.50 ea.
Congenital Adrenal Hyperplasia: The Facts You Need
To Know—$1.50 ea.
Cushing’s Syndrome: The Facts You Need To Know—
$1.50 ea.
Emergency Care Wallet Cards—$.50 ea.
THYROID MEDICATION
“HEADS-UP”
There are four brands of L-thyroxine: Synthroid,
Levoxyl, Levothroid and Unithroid. They have minor but
definite differences in absorption rate, and therefore can
give slightly different blood levels of thyroid hormone if
substituted. There are also now three generic versions, each
of which have absorptive rates that are similar to one of thDear Loyal Members of NADF,
National Adrenal Diseases Foundation is in financial peril,
and needs your generosity. We can honestly state that there is
a chance of dissolution of the organization.
If an adrenal disease support organization was not needed
by this nation, its dissolution would not be a tragedy. But…
We here at NADF see extensive evidence of the need for
support, information, research, etc., every day. The need is
larger then our organization is capable of handling with our
current work force and funds.
We now sponsor, if not currently with funds, but with education,
information and guidance, 31 support groups across
the nation, with several more needed.
Our newsletter is currently the only national adrenal
newsletter published in the United States, with the retirement
of Joan Hoffman’s Addison News. In many cases, NADF News®
is the only support and information available to adrenal
patients living in the more sparsely populated areas of the
United States. Please help us keep NADF News® in print.
Unfortunately, because of our lack of funds, we have had to
extensively trim the NADF News® down, and not print items
that would be of interest to you all. Our goal is to print any
and all items in the NADF News® that might be of interest to
adrenal patients.
We have started a member e-mailing list so that we can email
you updates on flu shots, support group meetings, the latest
research opportunities, etc. To get your e-mail address on
the list, e-mail it to NADFMAIL@aol.com.
Some of the projects NADF is working on that are in need
of funding are:
1. ELIMINATE THE POSSIBILITY OF DEATH
FROM UNDIAGNOSED ADRENAL DISEASE…by
reminding the entire U.S. diagnosing medical field with
a highly illustrated, color educational flyer which lays
out what the various symptoms of the adrenal diseases
are, with visuals.
2. INSURING IMMEDIATE AND ADEQUATE
EMERGENCY CARE FOR ADRENAL INSUFFICIENT
PATIENTS…by nationwide distribution of
NADF Emergency Care Sheets to emergency care facilities,
both stationary and mobile.
3. NADF News®…the quarterly NADF newsletter with
the latest information on adrenal disease and, in many
cases, the sole source of information and emotional support
for persons not located near one of the 31 NADFaffiliated
support groups.
4. NADF WEBSITE. Because of the generous volunteer
contribution of valuable skill, time and labor, our website
is currently being renovated by member Nancy Ronning.
We are very grateful to Nancy for the selfless donation of
her talents. Please check out the progress at www.medhelp.
org/nadf. With our new website, we hope to:
• Distribute the NADF News® using it, which would
save us much needed funds.
• Offer paid members a registration-only section which
will house the complete archives of the NADF News®
and other information.
• Offer the ability to donate and register online.
• Eliminate our current dependency on AOL-Time
Warner, again saving funds.
Facts to remember about NADF:
• Our services are provided under the supervision of a
team of highly-qualified, board-certified endocrinologists
volunteering as Medical Advisors.
• NADF is a 501©(3) fully tax-deductible non-profit
organization dedicated to providing information,education
and support to persons with adrenal disease.
• Contributions can be made by sending a check or money
order made out to National Adrenal Diseases
Foundation for the amount you wish to donate (minimum
$25.00) and mailing it to: National Adrenal
Diseases Foundation, 505 Northern Blvd., Suite 200,
Great Neck, NY 11021. Your donation will entitle you
to a yearly subscription to the quarterly NADF News®,
as well as other membership benefits.
Many businesses will match the donations of their
employees to non-profit organizations. Please talk to
your employer’s human resources department to check on
their policies and acquire a matching gift form.
• Your donation can be made online (minus a 3% processing
fee), using a credit card, at justgive.org by using the
following instructions:
A. Go to www.justgive.org and type in “National
Adrenal” under “Search for a Charity” on the left side
of the page.
B. Once NADF’s information page is up on your screen,
click on the “donate now” button on the top right of
the page.
C. You may then choose your donation amount and make
your donation in the name of a specific person.
D.You will also be asked if you wish to give the charity
(NADF) your name, email and mailing address. (It is
very important that you provide your name and
address, at least so we can record your donation.)
E. It is highly suggested that you print out a copy of
your donation receipt for your records.
F. NADF will then receive a check in your name from
justgive.org. Receipt by NADF of the justgive.org
check will generate your year-long subscription to
NADF News®.
Membership in NADF entitles you to:
• A year long subscription to the quarterly NADF News®,
inclusion on our e-mail list for special adrenal disease bulletins,
and eventual special membership rights to private
areas of our newly renovated website.
• If you donate $100 or more, you will receive a special letter
of thanks and an announcement in the newsletter
telling others of your generosity (per your permission.)
Let me thank you ahead of time for your generous donation.
You will be saving a necessary organization dear to all of
our hearts.
Thank you for your generosity,
Melanie Wong, Executive Director NADF
NADF NEEDS YOUR HELP!(Updated reprint of mass e-mail originally sent on May e
brands, but not all of them. Therefore, if no brand is specified
by the physician, the pharmacist or mail-order drug
plan can dispense a different generic each time, leading to
significant variations in blood level. The bottom line: insist
on a brand and stay loyal to that brand, changing only the
dose as needed with monitoring by the physician.
Paul Margulies, MD, FACP, FACE
REPORT ON DHEA STUDY
by Paul Margulies, MD, FACP, FACE
With the help of the NADF in recruiting study subjects,
Drs. Ketan Dhatariya, Maureen Bigelow and K.
Sreekumaran Nair published their research entitled “Effect
of Dehydroepiandrosterone Replacement on Insulin
Sensitivity and Lipids in Hypoadrenal Women” in the
March, 2005 issue of the journal Diabetes. This team, from
the Mayo Clinic in Rochester, MN, analyzed the effect of
DHEA 50 mg per day for 12 weeks on 28 women with
Addison’s disease, either primary or from bilateral adrenalectomies.
The research focused on the effect of the DHEA
on insulin sensitivity by measuring the amount of intravenous
glucose needed to sustain a stable blood glucose level
during insulin infusion. The results indicated that there was
an increase in insulin sensitivity in the women while on oral
DHEA. Since type 2 (adult onset) diabetics have a reduced
insulin sensitivity as a cause of the high blood sugar levels,
this study suggests a possible beneficial effect of oral DHEA
in preventing this type of diabetes. The study also showed a
reduction in total cholesterol levels, LDL (bad) cholesterol,
trigylcerides, but also HDL (good) cholesterol.
At this point, one cannot recommend DHEA treatment
in Addison’s disease based on this research alone. Previous
reports have indicated a mild benefit in overall sense of wellbeing
on DHEA. This report has some limitations. The
dose of 50 mg in women is usually associated with unwanted
male hormone side effects like acne and facial hair
growth if maintained for many months. Also, the study was
limited to 12 weeks, so a prolonged benefit has not been
proven. Men were not included in the study, so no conclusions
can be made for men with Addison’s disease. Clearly,
more research is needed, and we encourage the Mayo Clinic
group to continue their important studies.
CALCIUM AND VITAMIN D
FOR STRONG BONES
by Melanie Wong
To maintain healthy bones, people must get adequate
calcium, Vitamin D and physical activity, especially women
over 50.
Is it possible that this is even more important for people
with adrenal insufficiency? (The jury is still out on this one.)
While reading the first paragraph in this article, how
many of you remember reading Vitamin D? Do you just
remember calcium? Many people don’t know about the
importance of Vitamin D for good bone health.
Vitamin D is necessary because it helps the body absorb
calcium from ingested food. It allows calcium to leave the
intestines and enter the bloodstream. Vitamin D also works
in the kidneys to help absorb calcium that might otherwise
be excreted.
It is very difficult, almost impossible, to get the required
amount of Vitamin D from ingested food. It is found only
in a limited number of foods, such as certain cereals, various
dairy products, oysters and fatty fish such as sardines
and salmon. Milk has long been fortified with Vitamin D.
Now fortified orange juice can be added to the short list.
Of course, Vitamin D is manufactured in the human body
after sun exposure, but heat from the sun might be something
Addisonians don’t necessarily enjoy or tolerate well.
A suppliment might be needed for people to achieve an
adequate amount of Vitamin D in their diet. Note: Too
much Vitamin D is dangerous; talk to your doctor.
Sources:
Vitamin D Necessary for Healthy Bones
Jennifer Wider, M.D.
Society for Women’s Health Research
March 31, 2005
sunlightD.org website
Krispin Sullivan, CN
Medline Plus
Vitamin D webpage
4
MAILBOX
I’m almost 70 yrs. old and I lost my
adrenal glands when I was 34. Also I have
type 2 diabetes. I have some neuropathy in
my feet.
After taking 30 mg. of cortisone for over
30 years, my doctor decided to cut it down
to 20 mg. I cut down to 25 mg. for a few
months and I got neuropathy in my face. My cheeks would
itch and my nose and ears would feel like there was something
crawling around in there. My lips would tingle and
above the eyes and all across my forehead. I started taking
30 mg. of hydrocortisone again and in two days 95% of the
facial tingling was gone. I was losing weight and strength
too, so there is a danger of taking too little cortisone.
The secret to getting along with Addison’s disease and
diabetes is to stay very active. I cut firewood and work out
in a gym three days a week.
—J.L.
PEN PAL WANTED
NADF was contacted by a nine-year-old boy with
Addison’s disease who would like a pen pal or pen pals. If
your child would be interested in interacting with this lad,
please contact us either by e-mail (NADFMAIL@aol.com)
or phone (516-487-4992).
EMERGENCY CORTISOL
INJECTION INSTRUCTIONS
The New Zealand Addison’s Network has published
their “Guidelines for Intra-Muscular Injection of
Hydrocortisone (Solu-Cortef ) version 3”, which is available
for download on their website at www.addisons.org.nz.
Once on the site, click on NZAN Noticeboard, and then
click on Solu-Cortef guidelines. (Please keep in mind that
this was compiled for the citizens of New Zealand, so there
are bound to be some anomalies in prices, laws, etc.; otherwise,
the instructions should prove very helpful to you.)
WEBSITES
The adrenal disease organization of the United Kingdom,
the Addison’s Disease Self-Help Group, has updated their
website at
http://www.adshg.org.uk. There you will find:
French & Italian A&E crisis letter
Article about Adrenal Androgens
Worldwide Links to Addison’s groups
Genetics Home Reference:
http://ghr.nlm.nih.govYour guide to understanding genetic conditions. Find
out how genes work and how changes in certain genes
can cause disease. You can also learn about genetic testing,
gene therapy, and the Human Genome Project.
From NIH’s National Library of Medicine.
HELP WITH
MEDICATION COSTS
For patients on a limited income without insurance,
Cortef manufacturer Pfizer’s Connection to Care program
provides free medications to eligible patients. Visit
http://www.pfizer.com/pfizer/subsites/philanthropy/access/connection.care.index.jsp for more information. The application
forms are available on the web site.
(We thank New York (Upstate)/Northern PA Support
Group Co-Leader/Facilitator Holly Jagger for submitting
this information.)
CHEAP HEALTH INSURANCE
AVAILABLE TO MANY YOUNG ADULTS
Report lists America’s 10 most inexpensive cities for coverage
(Source: Orange Tree Communications, press release June 28,
2005. Reprinted using the Freedom of Information Act)
FRIDAY, July 8 (HealthDay News)—For the cost of a latte
a day, many of America’s 10 million uninsured young adults
could afford individual health insurance in most of the 50
largest U.S. cities, according to a new national report.
The Most Affordable Cities for Individuals to Buy Health
Insurance report was released by online insurance source
eHealthInsurance. The report lists the cities with the most
affordable health insurance options for single 30-year-olds.
“It’s important that young and uninsured people realize
that their health, as well as their financial future, are at
stake. We created this report to raise awareness with young
people that there are affordable solutions available in most
of the country so they can make an informed choice about
their fiscal and physical health,” Gary Lauer, CEO of
eHealthInsurance, said in a prepared statement.
The report cited Long Beach, Calif., as the city with the
most affordable health insurance for single young adults. In
that city, the cost of about 17 average-sized lattes (at $3.10
each) would cover the monthly premium for a health insurance
plan.
The other cities in the top 10 of most affordable cities
were: Sacramento, Calif.; Fresno, Calif.; San Diego, Calif.;
Columbus, Ohio; San Jose, Calif.; San Francisco, Calif.;
Oakland, Calif.; Mesa, Ariz.; and Tucson, Ariz. Individual
plan premiums in these cities ranged from $54 to $58.77
per month.
The most expensive cities included New York and
Boston.
More information:
The American Academy of Family Physicians has more
about health insurance.
Copyright © 2005 ScoutNews LLC. All rights reserved.
HealthDayNews articles are derived from various sources
and do not reflect federal policy. healthfinder® does not
endorse opinions, products, or services that may appear
in news stories. For more information on health topics in
the news, visit the healthfinder® health library.
We subscribe to the HONcode principles of the HON
Foundation.
Office of Disease Prevention and Health Promotion,
U.S. Department of Health & Human Services
5
Recently, my endocrinologist,
while on a routine visit, lowered
my Cortef (10 mg) to a
total of 15mgs a day. I am 76 years old
and have taken 30 mg of Cortef for
the entire 38 years I have been diagnosed
with Addison’s. She states that
ALL Addisonians are being similarly lowered to these
levels. Do you know of any research that is ongoing concering
this drop in corticosteroid level? I am not doing
well on the low dose and must grab a 10 mg tablet many
times over the course of a week.
Q & A
by Paul Margulies, M.D., FACP, FACE
Although it is true that 30 mg of hydrocortisone is
probably more than enough for most otherwise
healthy Addisonians, I think it is important to
slowly change the dose on any stable patient with adrenal
insufficiency. The symptoms that you have certainly suggest
that you need more than 15 mg. I think it is a mistake
to put all people in the same basket. There is a wide
range of steroid requirement, from as little as 10 mg per
day to as much as 50 to 60 mg. I find that most do well
with 20 to 25 mg per day. I suggest that you talk to your
endocrinologist about your response to the change in dose
and try 25 mg for now.
A.
Do you recommend a pneumonia shot or
hepatis series for adrenal insufficient patients? Q.
Pneumonia immunization is approved for anyone
over 65, but I think it is useful for Addison’s
patients, too. They are good for six years. Frankly,
an annual flu shot is probably more useful. The pneumonia
shot only prevents pneumococcal pneumonia, not all
upper respiratory infections. The hepatitis series of three
injections is suggested only for medical personnel who
would be exposed by needle sticks. It is not necessary for
Addisonians.
A.
Q. I have a question regarding possible interference
of methotrexate with Cortef. I was put on
methotrexate (7.5 mg once a week) for rheumatoid
arthritis about early October. It didn’t help; in fact I
began to feel worse, but we were finishing a new house,
moving in, etc. and I attributed this to stress. Early
December the dosage was increased to 10 mg per week.
I began to feel REALLY HORRIBLE. Weak, upset
stomach, weepy—it’s hard to describe how awful I felt.
My normal dose of Cortef was 25-30 mg per day (10-
10-5). I had gone to 60 mg per day and it didn’t seem to
help. I started going through my files regarding
Addison’s and came across a short blurb about drug
interference with cortisone. I discussed it with my PCP
(not an endocrinologist as none are available in this
area). We decided to drop the methotrexate about mid-
December. I began to feel better as of early February. I
am wondering if the methotrexate is indeed the culprit,
how long it should take to get this out of my system and
if there is something I could take in place of it. I would
prefer not taking anything at this time if I can avoid it.
Too many pills.
I am not aware of any interference in cortisone
metabolism from methotrexate. The fact that
increasing the hydrocortisone dosage didn’t help
suggests that it was not the adrenal insufficiency that made
you feel bad, it was the methotrexate. Many people can’t
tolerate it. I am not able to suggest other treatment for the
RA. You need a rheumatologist to review your condition
and your previous drug effects.
A.
NADF BOARD/MEDICAL ADVISORS
Paul Margulies, M.D., FACP, FACE—Medical Director
Maria New, M.D.—Medical Advisory Board
Phyllis Speiser, M.D.—Medical Advisory Board
Melanie G. Wong—Executive Director
Volunteers:
Website: Nancy Ronning
Grant Writing/Fundraising: Suzy Griswold
Accounting: Tim Skodon
Pharmaceutical Company Liaison: Les Sass
Newsletter: Julie Jackson
The NADF does not engage in the practice of medicine. It is not a medical authority,
nor does it claim to have medical knowledge. In all cases, NADF recommends that
you consult your own physician regarding any course of treatment or medication.
NADF News, Vol. XX, No. 2 – Contents/design ©2005 NADF
Thomas LeMasters, President
Nancy Harms, Treasurer
Dorothy Bailey
Erin A. Foley-Moudry, MPH
Marianne Kowalchuk
Bonnie Wolff
Are the new diet supplements that break down
cortisol and “stubborn belly fat” dangerous for
Addison’s patients?
Q.
I’ve seen those adds for the diet pills that block cortisol,
and they make me cringe! What is in there? I
have no idea, but whatever it is, it can’t be any
good for anybody, especially anyone with Addison’s disease.
There are no currently available diet pills that are both safe
and effective for anyone!
A.
Q.
Endocrinologists who specialize in diabetes who
are called diabetologists and those who specialize
in the thyroid who are called thyroidologists?
Are there adrenalologists?
Q.
No one calls themselves an adrenologist. Maybe I
should start. A.
The National Institutes of Health (NIH) announced
today a new policy designed to accelerate the public’s access
to published articles resulting from NIH-funded research.
The policy, the first of its kind for NIH, calls on scientists
to release to the public manuscripts from research supported
by NIH as soon as possible, and within 12 months of
final publication.
These peer-reviewed, NIH-funded research publications
will be available in a web-based archive to be managed by
the National Library of Medicine (NLM), a component of
NIH. The online archive will increase the public’s access to
health-related publications at a time when demand for such
information is on a steady rise.
“With the rapid growth in the public’s use of the
Internet, NIH must take a leadership role in making available
to the public the research that we support,” said NIH
Director Elias A. Zerhouni, MD. “While this new policy is
voluntary, we are strongly encouraging all NIH-supported
researchers to release their published manuscripts as soon as
possible for the benefit of the public. Scientists have a right
to see the results of their work disseminated as quickly and
broadly as possible, and NIH is committed to helping our
scientists exercise this right. We urge publishers to work
closely with authors in implementing this policy.
“In developing this policy, we made a concerted effort to
balance the importance of this archive to NIH’s public
health mission, with the need to provide flexibility for
authors, their institutions, and publishers in those cases
where immediate release is not possible,” Zerhouni added.
“NIH recognizes the importance of preserving quality
peer review and the viability of a diversity of publishing
models. Nevertheless, we expect that only in limited cases
will authors deem it necessary to select the longest delay
period.”
The NIH policy will achieve several important goals,
including:
• creating a stable archive of peer-reviewed research
publications resulting from NIH-funded studies to
ensure the permanent preservation of these vital
research findings;
• securing a searchable compendium of these research
publications that NIH and its awardees can use to
manage more efficiently and to understand better
their research portfolios, monitor scientific productivity,
and, ultimately, help set research priorities; and
• making published results of NIH-funded research
more readily accessible to the public, health care
providers, educators, and scientists.
Beginning May 2, 2005, the policy requests that NIHfunded
scientists submit an electronic version of the
author’s final manuscript, upon acceptance for publication,
resulting from research supported in whole or in part by
NIH. The author’s final manuscript is defined as the final
version accepted for journal publication, and includes all
modifications from the publishing peer review process.
The policy gives authors the flexibility to designate a specific
time frame for public release, ranging from immediate
public access after final publication to a 12-month delay,
when they submit their manuscripts to NIH. Authors are
strongly encouraged to exercise their right to specify that
their articles will be publicly available through PubMed
Central (PMC) as soon as possible.
PMC (http://www.pubmedcentral.nih.gov), a part of the
NIH’s National Library of Medicine (NLM), is the agency’s
digital repository of full-text, peer-reviewed biomedical,
behavioral, and clinical research journals. It is a publicly-accessible,
stable, permanent, and searchable electronic archive.
The release of this policy follows months of intensive
deliberations with representatives of patient and scientific
organizations, researchers, and publishers. NIH posted the
draft policy for public comment in September, and received
and reviewed over 6,000 public comments.
As part of on-going efforts to implement this new policy,
NIH plans to establish a Public Access Advisory Working
Group, as a subgroup of the NLM’s Board of Regents. The
Working Group will include representatives of the patient
advocacy, scientific, library, and publishing communities,
and will provide advice on implementation issues and assess
progress in meeting the new policy’s stated goals.
Additional information on the new policy and related
documents, including a “Questions and Answers” fact
sheet, can be found at:
http://www.nih.gov/about/publicaccess/index.htmThis NIH News Release is available online at:
http://www.nih.gov/news/pr/feb2005/od-03.htm.
PUBLIC ACCESS TO NIH-FUNDED RESEARCH
A SURVEY FOR YOU
TO FILL OUT
Sharon Terry, MA, President & CEO of Genetic Alliance,
asks for our help.
Here is a chance to be heard by an organization that
teaches health care providers about genetics—the National
Coalition for Health Professional Education in Genetics
(NCHPEG, pronounced “NITCH-peg”).
The Genetic Alliance is partnering with NCHPEG in a
survey. The purpose is to ask families living with genetic
conditions about their perceptions of their health care
providers’ knowledge of genetics. The information from
this survey will be used to develop genetics education for
specific types of health care providers.
This is an opportunity for persons with genetic
disorders to be heard. Please visit this website—
http://www.nchpeg.org/SFGC_Survey/Survey.asp—and fill
out the survey. If you have more than one medical condition,
you may respond to the survey once for each condition.
The advocacy group that has the most members answer
this short survey will receive a Genetic Alliance Tote Bag
and six Genetic Alliance CUP Club coffee mugs, which, if
won, we will give away in a random drawing from our
membership database.
6
7
NEW!! Florida/South: Jeannie Burke generously stepped
forward and offered to start a support group in Southern
Florida. We are very grateful to Jeannie for her selfless initiative.
Thank you Jeannie! To start things out right, the
group had a “great lunch meeting!” on Aug. 11th. Contact
the group for future plans.
NEW!! Virginia: Lisa and Hank Shehi have come forward
and fulfilled NADF’s dream of a support group in the
Virginias, where we have 39 members in total. Thank you so
much, Lisa and Hank! The group met for the first time on
July 12. The group’s latest meeting was held on August 9th
where there were seven in attendance, some traveling long
distances. For future meeting plans, please contact the group.
The Carolinas, Indiana, Maryland, Massachusetts
(Boston), Minnesota, Missouri, Oregon, Wisconsin: There
are several adrenal patients in these areas, and no support
groups. If you live in one of these locales, are good with
people and would like to get involved, please contact
NADF Executive Director Melanie Wong at (847) 726-
9010 or e-mail NADFMAIL@aol.com.
Arizona: This group will be getting together for a luncheon
in the fall, once the weather cools off. Contact group
for more details.
CA/Orange County-LA: This group met on Saturday,
August 6th and held a Pot Luck Lunch. The next meeting
is scheduled for December 3, 2005, where there will be a
Holiday Gift Exchange and Holiday Pot Luck lunch
12:00–3:00 pm. Location: 10861 Cherry Street, Suite 101,
Los Alamitos, CA. Contact group for more details.
CA/San Francisco/East Bay: This group’s next meeting is
scheduled for Saturday, August 27th. Contact the group for
more details.
CA/San Francisco-Peninsula: After a turn-out for the last
meeting of one person, the group is asking for input on
whether or not there is interest in a late summer or early fall
meeting. A decision will be made based on responses.
Contact group to express your opinion and show support.
Connecticut: On May 4th, Support Group Leader/
Facilitator Eileen Corey gave birth (two weeks early) to a
healthy, five-pound-12 ounce baby boy who Mom and Dad
have named Brendan Michael Corey. Baby and mom are
doing fine. Our congratulations go to the Coreys on their
good fortune.
Georgia: This group’s next meeting is tentatively scheduled
for late August. Contact the group for more details.
Idaho, Montana, Wyoming: This group has a new website
at www.addisonssupport.com and is asking for story
contributions from adrenal patients to help round it out.
Feel free to contribute, no matter what your locale.
Illinois: On May 15th, the group held an injection
instruction meeting featuring guest instructor Roxanne Lill,
RN. A total of nine people attended. The next meeting is
scheduled for Sunday, August 21st from 3 to 5 pm, at
Evanston Hospital, Room G-966 (ground level). Contact
Meeting Coordinator Tracy McKenty at (630) 904-4053 or
tlmckenty@aol.com for more info.
Iowa: This group is planning to meet September 18,
2005 at the Hamilton County Public Hospital Educational
Room at 12:15 pm. Attendees will have lunch together,
with the meeting starting at 1 pm. They hope to have a
pharmacist as guest speaker. The attendees will also discuss
some important details regarding future meetings. Contact
group for more details.
Michigan: The group will be meeting Sept 24, 2005 at
University of Michigan Hospital, from 10:00 to noon in
Cafeteria Rooms C and D. The featured speaker will be
Assistant Professor Gary Hammer, MD, PhD. Dr. Hammer
is a medical endocrinologist specializing in the treatment of
adrenal and gonadal diseases. Contact group for more details.
Nevada: This group had its first meeting on July 3rd.
Three people attended. They plan to meet on a quarterly
and as-needed basis. The next meeting will be in October
where emergency steriod injections and getting the word
out about the support group to the community will be discussed.
Contact the group for more details.
New Jersey/SE PA: This group’s last meeting was held on
May 14th. It was a pot luck lunch. The next meeting is
scheduled for Sat., Sept. 24th at 1 pm. The guest speaker
will be rheumatologist Dr. Mark Fisher. He will be speaking
on steriods and osteoporosis. Contact the group for more
details.
Ohio/Central: The group met on July 9th where they
discussed Traveling and Summer Heat. There were 11 in
attendance. Their next meeting is scheduled for October
9th. Contact group for more details.
Ohio/NE: Three members are meeting for lunch in
August where they are hoping to plan a fall meeting or a
holiday dinner meeting (at a restaurant). Contact the group
for more details.
Texas/SE: Gastroenterologist Martin Mauk, MD will be
joining his wife Glenda Mauk as co-leader of the SE Texas
Support Group. Thank you, Dr. Mauk! The group’s first
meeting is scheduled for Sept 29th, 7-9pm at Memorial
City Hospital, 920 Frostwood, Houston, 6th floor North
Tower. Contact the group for more details.
Washington State: The group’s next meeting will be on
Oct.15, 2005, from 10:00 am-12:00 pm, in the large conference
room of the Kent Library, 212 2nd Ave N. in downtown
Kent. Contact the group for more details.
BC Lower Mainland: This group will be meeting
October 29, 2005, 1–3 p.m. 260 Sherbrooke St., New
Westminster, BC. Members will be interviewed by UBC
first-year medical students. This is part of their ongoing
advocacy for Addison’s and Cushing’s diseases and was well
received last year. Contact group for more details.
Vancouver Island (Victoria): The Vancouver Island support
group met June 4th in Victoria with 13 people attending.
This group’s next meeting is scheduled for October
15th at the Victoria General Hospital in Room 1814, from
1:00 to 3:00. Please contact the group for details.
SUPPORT GROUP UPDATES
Each support group has contact information provided on the next page in the box titled “NADF SUPPORT GROUP CONTACTS”
and “The Canadian Addison Society Support Group Contacts”. If a group does not have an update below, and you have any questions
about an individual group’s next meeting or need directions, please contact the person(s) listed there.Dear NADF: Please accept my tax-deductible donation of: h$25 h$40 h$50 h$100 h$250 h$500 h$__________
Please mark one of the following two options: hCheck enclosed for above-designated amount hCredit card donation made via JustGive.org
THANK YOU FOR YOUR GIFT!
As always, a donation of $25 or more entitles you to an annual membership in NADF, and you will receive the NADF Newsletter quarterly. Please be sure we have all of
your current/correct information by filling in the form below. All information provided is confidential and will not be sold or rented under any circumstances.
NAME_____________________________________________________________________ TEL. NO. ( ) ____________________________
STREET ADDRESS_____________________________________________________________________________________________
_________
CITY ____________________________________________________________________ STATE _______________ ZIP ____________________
E-MAIL _________________________________ ADRENAL DISEASE: hAddison’s hCushing’s hCAH hOther: ________________
Please make checks out and mail to National Adrenal Diseases Foundation, 505 Northern Blvd., Great Neck, NY 11021
8
NADF SUPPORT GROUP CONTACTS
Arizona: Kay Campbell (602) 944-2863;
kcamp2468@aol.com
California/San Karen McNamara (605) 786-1567;
Francisco Peninsula: kmac787@hotmail.com; and
Karen Lutke, kmlutke@sbcglobal.net
CA/San Francisco Trice Roberts (510) 724-2703;
Northeast Bay Area: Tr4beauty@comcast.net
CA/Orange County Nancy Harms (714) 828-7014;
and LA Area: nharms@comcast.net
California/San Diego: Ruth Avakian (619) 460-4148
Colorado: Flossie Nicoloff (303) 695-0283;
flosnic@aol.com
Connecticut: Eileen Corey (203) 878-5692;
ecorey76@hotmail.com
Florida (Central): Linda O’Leary (813) 264-6919;
olearydltp@aol.com
Florida (South): Jeannie Burke (954) 527-5413;
jeanniebe@aol.com
Georgia: Erin Keeble (770) 552-7670;
ekeebs@bellsouth.net
Idaho (Montana Justine (Dusty) Hardman (208) 787-1655;
and Wyoming): dhardman@tetontel.com
www.addisonssupport.com
Illinois Melanie Wong (847) 438-9649;
InternetLifer@aol.com
Iowa: Roberta Hirsch (515) 968-4516;
hirschrr@wccta.net
Kansas: Debbie Hall (316) 729-2805;
debbieshall@cox.net
Kentucky/Tennessee: David Brown (270) 529-9186;
dachele@bellsouth.net
Maine: Rachel Bennett (207) 549-5583;
rbennett_sw@yahoo.com
Michigan: Sandra Rock (810) 329-9247;
asrocko@comcast.net
Nevada: Stephanie Holtorf (775) 322-8440;
cell: (775) 336-9131;
sfholtorf@yahoo.com
New Jersey/SE Jan Judge (856) 354-6029;
Pennsylvania: JanPT@aol.com
Susanne Mee (856) 764-6583;
smee54@comcast.net
New York City: Linda Lake (212) 735-6575;
lindalake@rcn.com
New York/Long Island: Candy Cacciola (516) 674-0760
Allyson Dyer (631) 878-9037;
fancyfree8499@yahoo.com
NY (Upstate)/ Catherine Yarmel (570) 379-1016;
Northern PA: Catdancing24@hotmail.com
Holly Jagger (607) 687-2532;
hjagger@stny.rr.com
Ohio/Central: Patti White (614) 890-2167;
Pjwhite76@aol.com
Betsey Greenwood (614) 854-0926;
Heb30@aol.com
Ohio/NE: Peggy Buckshaw (330) 688-9608;
PBShaw@core.com
Oklahoma: Pat Crowley (918) 744-8129;
PJCrowley@att.net
Texas/SE: Glenda Mauk (281) 242-1941 (fax);
glenda.mauk@gmail.com
Utah: Gavin Christensen (801) 918-5002;
Gavin@vspring.com
Virginia: Hank & Lisa Shehi (804) 745-0990;
VaAddisonsGroup@yahoo.com
www.VaAddisonsGroup.freeservers.com
Washington State: Cindy Boyd (253) 854-3745;
Cindyboyd1@hotmail.com;
http://nwaddisons.blogspot.comSPECIALTY SUPPORT GROUP CONTACTS
Adrenomyelo- David Brown (270) 529-9186;
neuropathy: dachele@bellsouth.net
Parents of Adrenal Dawn Illsley (607) 771-6746;
Insufficient Children: dcillsley72@aol.com
THE CANADIAN ADDISON SOCIETY (CAS)
Toll free 1-888-550-5582; lainger1@sympatico.ca
CAS support group contacts:
Vancouver Island Christy Lapi (250) 245-7554;
(Nanaimo): clapi@shaw.ca
Barbara Hunn (250) 756-4385;
bhunn@netscape.ca
Vancouver Island Jim Sadlish (250) 656-6270;
(Victoria): jsadlish@horizon.bc.ca
BC Lower Mainland: Judy Stanley (604) 936-6694;
bugbee@shaw.ca
Eastern Ontario: Sue Steedman (613) 726-7414;
steedman@magma.ca
Southern Ontario: Jordan Latter (905) 893-4374;
annemarielatter@yahoo.ca