news archive
9/27/2006 ++ Remicade Study in Florida!
Dr. Kerdell in Miami Beach, FL is conducting a crossover
double blind study for the drug Remicade. The company that is sponsoring the
study may also be providing funds to fly people in and pay expenses for
those who are out of town/state. If you are interested, please contact:
Dr. Francisco Kerdell
Miami Beach, FL
(305)324-2110
Ask for Annika who coordinates study participation.
9/11/2006 ++ Annual Board Meeting
The HS-USA Annual Board meeting will be held on
Sunday 9/24, 2006 at 7:00 pm EST.
9/8/2006 ++ Congratulations, HSF
The President and Trustees of HS-USA, Inc. would like to
take this opportunity to congratulate Michelle Barlow, Robert J. Howes and
the HSF, Inc. on the success of their symposium in Dessau, Germany earlier
this year. It is exciting and encouraging to see the global roadmap for HS
research begin to take shape. more >>
7/30/2006 ++ Genetic Study Update
The area of research most promising for finding the cause of Hidradenitis Suppurativa, and ultimately a cure, is the study of the disease's genetic origins. HS-USA is currently collaborating with the University of Michigan in the first HS genetic study conducted in the US.
HS-USA is coordinating funding and has been actively involved in the recruiting of participants since the end of last year. So far 92 samples have been collected for the study, and the scientists at UofM are making progress in identifying genetic markers common among family members.
If you would like to help drive this groundbreaking research, you can participate in one of two ways:
-
Donate to the UofM genetic study fund. To find out how, click here.
-
If there are 5 or more members in your family who are affected with Hidradenitis Suppurativa, your family is eligible to participate in the study. Email genome@hs-usa.org to get more information.
HS-USA honors and remembers Teri Maxfield, who passed away on Thursday, 8/17. There is no adequate way to express the gratitude and love we feel towards Teri, a long-standing "rock" in the HS community. She was a contact for 6 states, and an active, caring and loving member in the Northeast community support group. Teri leaves behind a loving family, her husband Arty, daughters Kim, Tracey, and Keri, son Doug, three beautiful grandchildren, and her community of HS sufferers, who miss her terribly and will never forget her. |
7/30/2006 ++ HS-USA at the Abilities Expo
HS-USA will be represented at the Abilities Expo for independent and assisted living products and services in Novi, Michigan. This expo presents a great platform to communicate and educate caregivers, medical personnel, and patients about Hidradenitis and our organization's services. It is part of our ongoing, nationwide campaign to raise awareness in our communities, helping HS patients be treated with respect and understanding.
The Abilities Expo takes place in Novi, Michigan on August 18-20, 2006. For more information, click here.
 In
Memoriam Nikki Minardo
It is with deepest sadness that we report the passing of a very dear HS friend and sister this week in her home in Pennsylvania. Nikki Minardo was only 26 years old when she was taken by Congestive Heart Failure, likely caused by complications from the many pain medications she was on. Nikki has been through a lot with HS for many years and was put on disability at a very early age. She had radiation treatment, did long term antibiotics, surgeries, and she never gave up hope and kept trying. Many of us were blessed to meet Nikki at various get-togethers, like the Las Vegas conference, or the Maryland and Pennsylvania bashes. Nikki was a very active and integral member of the Pennsylvania Support Group. She didn't just make friends, she helped build a family in the HS community. She always had a smile for people and will be greatly missed by many. Nikki's mom, Pat, has said that flowers are appreciated but she would prefer donations be made to HS USA in Nikki's memory. If you would like to make a donation in Nikki's name, visit our donations page, and be sure to mark your payment "In Memoriam Nikki Minardo". All donations made will be accredited to Nikki in our Annual Report. Pat Albright
|
To
send cards directly to Nikki's family, write to: ++ 7/4/2006 ++ Conference materials and recap
The 3rd Annual Hidradenitis Suppurativa Conference is over! It was
probably the most informative and well-rounded HS-USA conference so far. We
heard from excellent speakers, learned a lot, shared our stories and
remedies with fellow sufferers, and practiced Yoga together. All in all, a
very successful and wonderfully organized 3 days, and an extraordinary
experience for all participants!
We will be making available conference materials and handouts, as well as
pictures, as we collect them.
Please visit our HS
Conference 2006 Recap page.
++ 4/2/2006 ++ Some statistics...
In the last 2 weeks we've had 14 people join the hs-usa forum and
post that the web site has helped them either find out what they
have or find help and comfort after having been newly diagnosed.
That is a rate of ONE PERSON A DAY!
In the month of March people requested 72,083 pages. Last week, we have
served 569 unique hosts (i.e., people). Since Feb. 14th, we served 14,233
people. Also since Valentine's, 7,220 people have added the site to their
favorites, the "About
the disease" page was visited 7,132 times; 6,994 doctor referrals were looked up, and "Accutane
is no cure" was read 618 times.
++ 10/26/2005 ++ This is a case report worth reading!
MedScape has posted an extremely detailed and insightful report of a
life-threatening case of HS, unresponsive to most common treatments -
including isotretinoin (Accutane). The medical team successfully performed
wide excision surgery in multiple regions.
A free logon account is required to access the full
article.
NOTE of CAUTION: This is a very severe case, described using very
graphic images. The disease will not develop to this stage for all
sufferers.
Surgeries are not always completely successful and without recurrence - hs-usa
does not support the authors' conclusion that "HS is a curable disease".
++ 10/13/2005 ++ Do you have family members with HS?
HS-USA has been asked by two human geneticists to supply contact information for those HS families where there are a minimum of five members of the family with HS; this includes immediate family plus aunts, uncles, first cousins, and of course, grandparents. You, and your family members, may be asked to participate in non-invasive genetic research.
Please provide name and email or phone number of a family contact person for this study and email them to genome@hs-usa.org.
++ 10/10/2005 ++ New patient survey online
For many sufferers of Hidradenitis, HS is not the only problem. To help us identify patterns of related diseases, we have released a new survey - Related symptoms and diseases. If you are afflicted with HS (even if it is your only problem), please take a few minutes to complete this survey.
++ 8/31/2005 ++ Clinical Trial (for women only)
New York University School of Medicine and Genentech are sponsoring a
study of the effectiveness and safety of efalizumab (also known under the
brand-name Raptiva) in treating Hidradenitis Suppurativa. Similar to Enbrel
(etanercept)--currently being studied at the University of Pennsylvania--efalizumab
is also an immunosuppressant administered by subcutaneous injection.
For more
information, see ClinicalTrials.gov
This study is for women only!
++ 8/22/2005 ++ 5,000 signatures!
The HS petition now has OVER 5,000 signatures! The petition team -Shari, Karen, and Angel- have been working hard to promote this petition, and will be sending it out to key decision makers. Thanks to everyone who signed. Please don't forget to contribute to hs-usa to support this effort.
We need your help TODAY!
HS-USA has an opportunity to educate and spread the word at the Disabilities Expo in Novi, Michigan (August 26-28).
The booth rate is $700, which the organization currently just cannot afford
to spend.
If everyone reading this could contribute $5 or $10, we can pull this
off. Please help us continue to raise awareness for this disease.
Click here to donate.
Thank You!
++ 7/29/2005 ++ HS on Michigan TV!
On July 7, 2005, Mellissa, Cathy, Sherrie and Vix of the MI-OH group produced a 27-1/2 minute live-taped program for the Ann Arbor, Michigan CTN (Community Television Network) and it has been aired twelve times in eleven days in Ann Arbor at different times of the day and evening. Ann Arbor is the home of many medical research facilities and two large hospital complexes, as well as the University of Michigan.
Viewers have told them they did an excellent job in describing HS, Including the showing of graphics for all three stages. The four each received a copy of the tape and it will be shown to appropriate groups, including parent-teacher organizations, gym teachers and camp counselors, etc., as well as the general population via local CTN stations and other PBS networks.”
There are restrictions for use of this copyrighted tape. Copies of the tape may be purchased for the cost of the copying and postage to ship; please order at info@hs-usa.org.
++ 7/28/05 ++ 3rd annual board meeting minutes posted
We have just received this year's board meeting minutes. They can be viewed here.
++ 4/19/2005 ++ Clinical Trial
A clinical trial on the drug etanercept (Enbrel®) is being conducted by Amgen and the University of Pennsylvania, who are currently recruiting patients. See ClinicalTrials.gov for more information.
++ 02/16/2005 ++ Keynote Speaker for the 2nd annual HS Conference
HS-USA is proud to announce our keynote speaker for this year's conference. Marcia Jones is the Founder and Director of The Dixie PMS & Menopause Center, an international women's holistic health resource group, as well as a former sufferer of HS herself. She will provide valuable insight in how she defeated the disease with holistic methods.
++ 01/30/2005 ++ February Fundraiser of the Month
Our
February Fundraiser of the Month is the HS-USA eScrip
program. Please take a few minutes today to sign up with eScrip
and start supporting HS-USA without having to spend a dime or raise a
finger! eScrip offers many options for you to participate by registering
your grocery club card, or using your credit card with one of the many
participating merchants.
++ 01/09/2005 ++ How many people have HS?
Good question! You've probably read it is more than 1 million, but how does up to 11 million in the US sound? We have summarized all known prevalence estimates on Hidradenitis. The ranges are rather wide-spread, but we can safely say that we are well above the "200,000 affected" threshold for orphan diseases.
++ 12/6/2004 ++ Get the HS Calendar 2005
The
contest resulted in a wonderful calendar and journey through our different
ways of life affected by a common disease. It is now
available for sale at the hs-usa store! Treat yourself to part of the
"HS Family" album, and help HS-USA at the same time.
We've also added other great new items to the store!
++ 12/2004 ++ T'is the season...
"Friendship is born at that moment when one person says to another, 'What!
You too? I thought I was the only one'".
C.S. Lewis
Many such moments have happened here this year and we hope for many more
in the years to come. The realization that there are others suffering from
this "unspeakable" disease bears much comfort for each of us and hope and
strength for all, but also a great responsibility - to remember. Remember
the times we suffered alone, desperate for answers, a compassionate ear,
words of understanding or a shoulder to cry on.
We receive all of those things from our HS Family. In this time of hope we
must also remember to be thankful, forgive the quarrels, drop the prejudices
and reach out to a friend...
"If we have no peace, it is because
we have forgotten that we belong to each other."
Mother Teresa
Wishing our Friends Peace and Pain-free Holidays
With Hope for a Cure for us All!
++ 11/1/2004 ++ "We are..." having a CONTEST!
Announcing our first annual HS
Calendar Photo Contest and Fundraiser themed "We are..."
Do you want to be on the hs-usa store's 2005 calendar? Send us your
unique picture or collage telling about who or what "We (people afflicted
with HS) are...".
Act now, the entry deadline will be coming up quickly!
++ 10/29/2004 ++ Published in Dermatology Nursing!!
The October issue of Dermatology Nursing (frontline in HS care!) has a
Patient's Perspective on Hidradenitis Suppurativa, written by our own Shari
Solarski!
Read the article here
today!
++ 10/16/2004 ++ New Fundraiser
SHOP FOOD LION - HELP HS !!
Anyone who shops at any Food Lion Supermarket can now link up their MVP
Savings Card to a nearby HIDRADENITIS group so that every time you buy
groceries a fraction of the money will go to HS-USA! THIS IS ABSOLUTELY
FREE TO YOU!
Click here for more
information.
++ 8/14/2004 ++ Visit the Doc Exchange
We at HS-USA are often asked for local physician recommendations. We have
no way of doing that. However, we can provide YOU, the patient, with a tool
to exchange information. If you've found a great doctor, your recommendation
may help another sufferer get the quality care we so desperately need and
deserve.
Please check in
with the Doc Exchange!
++ 7/5/2004 ++ Announcing: The 2005 Rally in Brighton, MI
Preliminary information is now available, so you can plan your trip to the 2005 Conference and
Rally with the theme of "Alternative Therapies and Potential Cures".
Let's set an attendance record with this one!
++ 6/28/2004 ++ Site updates
It was a busy weekend with site updates and maintenance. There is much more to come shortly, but here's a start:
- Check out the Rally Recap, especially if you weren't among the lucky ones to be there!
- 2004 Board Meeting Minutes have been posted.
- An initiative to collect artwork for our Cafepress store is underway.
- New abstracts have been added to the database.
Stay tuned for information on next year's conference, a new patient survey and much more!
++ 5/7/2004 ++ Conference Update!
Agenda for all 4 days and summary information are now available here.
++ 4/10/2004 ++ 3rd Annual Rally and HS-USA Conference is coming up!
Register TODAY to reserve your spot at this event, scheduled June 3-
6, 2004 in Nashville.
Dr. Thatcher will be speaking about hormones, and you will have opportunity
to meet fellow sufferers, and HS pioneers and community leaders.
For more information visit the Rally web site.
++ 3/21/2004 ++ It's easy to contribute to HS-USA
Please visit our fundraisers page to see your many options to contribute to hs-usa. Consider using them next time you purchase gifts, book travel, or recycle your printer cartridges. It's easy and and every little penny helps!
++ 3/19/2004 ++ Where are the good doctors?
We get a lot of requests to recommend good doctors. As you can imagine, that's a difficult thing to do in a country as big as this and with so many subjective opinions. But maybe we can start a little campaign to collect YOUR experiences and help others find good treatment as well. If you have a great doctor, please take a moment to tell us about him/her.
++ 3/15/2004 ++ Does this sound like your story?
WOW! We have 1,000 respondents to our first survey!
It is time to come to some conclusions about the demographics of HS
sufferers. Since 85% of respondents are women, compared to an even split
between male and female internet users in general, it’s probably safe to say
that this disease is
more prevalent in women
So let’s call our subject Eva….
Eva is a fair-skinned overweight Caucasian female, somewhere between 21 and 40 years old, employed full-time, child-less, and lives in a large city. She’s had the disease since she was a teenager of normal stature who enjoyed a smoke every now and then. She started getting bumps in her groin and armpits, now she’s somewhere between stage 2 and 3 and it has spread to other areas. It never lets up. It took her 6-10 years to finally get diagnosed with HS by a dermatologist. She has tried long-term antibiotics, Accutane, surgery and dietary supplements with very limited, or no success at all.
Eva is in considerable pain most of the time, but rarely takes medication for it. She’s gotten used to the pain.
It gets especially bad when Eva is stressed, in hot and humid weather, and before she gets her period. Eva is often tired and depressed, and also suffers from IBS, bouts of acne and some other wicked skin problems.
Complete survey results can be found here.
++ 3/15/2004 ++ Financial Statements posted
HS-USA's 2003 Financial Statement scans have been posted.
++ 2/9/2004 ++ Get great stuff - help hs-usa!
Ginny from Gifts Of Love has graciously offered to share profits from her
marvelous arts- and craft-store with hs-usa. Please visit Gifts Of Love and browse the wonderful selection of gifts and treats, and 50% of the
profits from sales will be donated to hs-usa!
Thank you Ginny!