June is Antiphospholipid Antibody Syndrome (APS) Awareness month

Antiphospholipid Antibody Syndrome (APS) is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA

Volume 9 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

Hello!!

The SPRING/SUMMER 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol9SprSum2008.pdf

The next volume will be coming out in August/September, 2008.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our support forum. (http://www.apsforum.com) So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters. Thank you to those people who have submitted articles.

If you have submitted an article and we have not used it yet, we will be using it in the near future.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

FOR IMMEDIATE RELEASE

Date: 06/02/2008
Contact: Christina "Tina" Pohlman

Phone: 608-782-2626

Website Address: www.apsfa.org

Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The APS Foundation of America, Inc. (APSFA) has declared June as National Antiphospholipid Antibody (APS) Awareness Month. We are educating the public and medical community about this disorder, urging people to Get in the Flow!

This disorder threatens to become more common than Lupus and Multiple Sclerosis.

The APSFA is sending petitions to several states to make June APS Awareness Month. The APSFA will be attending conferences, medical seminars, grand rounds and health fairs to share the patient perspective and provide awareness of APS throughout the month of June and also encouraging the community to Get in the Flow.

Individual and APSFA fundraisers will be occurring throughout the country to help promote APS awareness and help support the mission.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

The APSFA is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626

Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

APS Awareness PSA

URL: http://www.youtube.com/watch?v=_Ib_0Gk94XI

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA

Volume 8 of Our Newsletter, "Antiphospho...What?" is available for download!

Volume 8 of Our Newsletter, "Antiphospho...What?" is available for download!

The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol8WinSpr2008.pdf

The next volume will be coming out in May, 2008.

Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below. We are open to any suggestions.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support.

Deep-Vein Thrombosis (DVT) Awareness Program

Deep-Vein Thrombosis (DVT) Awareness Program
Featuring: Melanie Bloom, National Patient Spokesperson, Coalition to Prevent DVT

Date & Time: March 11, 2008, 2:00-3:00PM

Location: University of Utah School of Medicine, Salt Lake City, UT

Sponsored by: University of Utah Thrombosis Service & University of Utah 5 Med Nursing Staff

If you have any questions, please call 801-581-7818.

Click here to download a flier with more information about this DVT Awareness Month event.

http://www.clotcare.com/clotcare/dvt_awareness_month_march_2008.aspx#dvtawarenessunivutah

Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention

Blood Clots and Blood Clotting Disorders:
Key Issues in Diagnosis, Treatment and Prevention
Saturday, March 1, 2008

Education and Discussion Seminar on Blood Clots
Patients, Family Members, Public and Health Care Providers are welcome

This seminar is FREE but registration before February 22nd is requested.

Hosted by

The University of North Carolina Thrombosis Program in conjunction with the National Alliance for Thrombosis and Thrombophilia and Duke University Thrombosis & Hemostasis Center

Location

Hilton Hotel
Raleigh-Durham Airport at Research Triangle Park
4810 Page Creek Lane, Durham, NC
(919) 941-6000

Agenda

Click here to download the complete program.

Registration Information

This seminar is FREE but registration before February 22nd is requested as space is limited. Registration includes breakfast, lunch and materials.

To register, please log on to http://unchealthcare.org/bloodclotseminar. For questions, call Cheryl Jeanneret at 919-843-2568 or e-mail: cheryl_jeanneret@med.unc.edu.

GoodSearch.com Charity of the Day 2/28/08!

The APS Foundation of America, Inc will be featured as the Charity of the Day on GoodSearch.com on February 28, 2008!!

Please remember to use GoodSearch.com, the Yahoo-powered search engine, for all of your web searches as we receive a penny every time you do a search!!

And, please do all of your online shopping through GoodShop.com, the online shopping mall which donates a percentage of each purchase to us! Hundreds of great stores including Target, Gap, Best Buy, Barnes & Noble, Macy’s and ebay have teamed up with GoodShop and every time you place an order, you’ll be supporting us!

You can use GoodSearch and GoodShop every day, but be sure to check us out on the GoodSearch homepage on February 28, 2008!!

New APSFA Cafe Press Coupon!

Here is a Cafe Press Coupon to help with your order:

Save $5
when you spend $50 or more!
----------------------------- Enter the coupon code CLOUTBUMPER
when checking out. -----------------------------
Coupon expires 2/23/08... so hurry!

This is really a good coupon. Perfect time to purchase the log book, a t-shirt and tote bag. Check out our NEW designs!
Support APS & Lupus Awareness & the APSFA!

100% of the profits from these products will go to the APS Foundation of America, Inc.

To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation



Brought to you by the APS Foundation of America

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Giving Tree 2007 - Thank You!

Thank you to everyone who donated to decorate our tree! Because of your generous donations, we were able to raise $1095 with this year's Giving Tree!

This tree holds a special meaning for the members of the APS Foundation of America, Inc and the community it serves. And since the Giving Tree was such a big success, we will be making this an annual tradition.

CLICK HERE to see our 2007 Giving Tree

What is New On MissionFish This Week?

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582




Original 16x20 Oil PAINTing Winter Landscape snow tree
slim80craft2
Starting Bid: $18.99
15% donated to the APSFA
3d 7h 51m time left to bid as of this post


Original 8x10 Acrylic Painting Landscape COA blue green
slim80craft2
Starting Bid: $9.99
10% donated to the APSFA
3d 8h 23m time left to bid as of this post


Original Small Acrylic Painting Chickadee Bird coa
slim80craft2
Starting Bid: $8.99
10% donated to the APSFA
3d 8h 48m time left to bid as of this post


Original Small Acrylic Painting winter snow landscape
slim80craft2
Starting Bid: $8.99
10% donated to the APSFA
3d 8h 55m time left to bid as of this post

APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE 25th ANNIVERSARY OF THE ORPHAN DRUG ACT

FOR IMMEDIATE RELEASE

Date: 12/19/2007

Contact: Christina "Tina" Pohlman

Phone: 608-782-2626

Website Address: www.apsfa.org

Email Address: apsfa@apsfa.org

APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE

25^th ANNIVERSARY OF THE ORPHAN DRUG ACT

La Crosse, WI, January 3, 2008----On January 4, 1983, President Ronald Reagan signed groundbreaking legislation that brought real hope for more than 25 million Americans living with one of the 7,000 rare disorders recognized today. The Orphan Drug Act of 1983 (ODA) spurred breakthrough drug research and development for little-known diseases, while providing a potent catalyst to the growth of the pharmaceutical and biotechnology industries in the U.S.

An “orphan” disease is defined by the U.S. Food and Drug Administration (FDA) as a disease or condition that affects fewer than 200,000 Americans. In the past, because of very low prevalence, orphan diseases were overlooked by drug and medical device developers. In the 10 years prior to passage of the ODA, only 10 new drugs for rare diseases were developed by the pharmaceutical industry. In the 25 years since the approval of the ODA, more than 300 new orphan drugs have been approved in the U.S.—an average of about 11 new drugs every year.

The APS Foundation of America, Inc. is just one organization that acts on behalf of patients and their healthcare professionals to promote improvements in diagnosis and treatment for a rare disease—Antiphospholipid Antibody Syndrome (APS). APS affects new patients every year. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. For example, it has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS.

In obstetrics it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVTs), Pulmonary Embolisms (PEs), and even worse, amputations are due to APS. And it is believed that 40-50% of patients with Lupus also have APS. Still, with these statistics, APS rarely is discussed as a women’s health issue and is misdiagnosed often. Therefore the total number of people affected and true statistics are unknown really.

APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. There are two known forms of APS. APS may occur in people with systemic lupus erythematosus, other autoimmune disease, or in otherwise healthy individuals. Sadly, when most people hear about APS and it being referred to as autoimmune disease, they incorrectly confuse the terms autoimmune with acquired immune deficiency syndrome (AIDS); or they think this is a form of cancer.

This lack of knowledge and awareness results in needless suffering for persons with APS. Misdiagnosis and / or delayed diagnosis usually result in damage to vital organs. The need to bring a national attention to APS as a common factor in multiple miscarriages, thrombosis, young strokes and heart attacks is vital in order to bring a joint effort to research, funding, early detection, and eventually, prevention and cure for APS.

There is no cure for APS, but there is treatment. The treatment of choice for patients with APS who have had a blood clot is anticoagulant therapy. Please note there is no FDA approved treatment to control these antibodies that we for that cause these problems. This is usually successful in preventing further clots. For women with APS and recurrent miscarriages who have not had a prior blood clot, the use of anticoagulant therapy during the pregnancy significantly increases the likelihood of a successful outcome. Some individuals may have elevated antiphospholipid antibodies but have no clinical manifestations of the syndrome. These individuals are usually treated with aspirin. Aspirin reduces the risk of blood clots by making the platelets less sticky. Studies are ongoing to determine how helpful aspirin is and whether low doses of anticoagulants might be more effective.

In general patients who have had a blood clot (i.e., stroke, heart attack, DVT) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants indefinitely. Discontinuing treatment after a fixed period of time, such as six months, may be quite dangerous in such patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time. It is not known whether it is safe to stop anticoagulation in this situation. Consultation with a doctor experienced in treating APS is recommended for such patients.

On the 25^th anniversary of the signing of the Orphan Drug Act, we join with the National Organization for Rare Disorders (NORD) and its members in continuing our commitment to, and support for, patients around the world with rare diseases. We also celebrate the success of this legislation in bringing improvements in healthcare to millions of Americans. Through drugs as diverse as Thalomid® (thalidomide), Myozyme® (alglucosidase alfa), Nutropin® (somatropin {rDNA origin} for injection), and Gleevec® (imatinib), the ODA has offered new opportunities for patients that might never otherwise have existed.

NORD was founded in 1983 to help people with rare “orphan” diseases and to assist the organizations that serve them. The founders of NORD were a driving force behind the passage of the ODA. This is an appropriate time to congratulate them on their vision and recognize them for their persistence and their success.

We also recognize that the achievements of companies like Genentech, Amgen, Genzyme, Allergan, Cephalon, Celgene and others have been profoundly influenced by the existence of the ODA, which has brought jobs for thousands in the biotech and pharmaceutical industries, financial rewards for many of the early investors in such companies, and diverted the focus of scientific inquiry to chronic and life-threatening diseases that were previously untreated, leaving patients hopeless, until the ODA was enacted.

With the current advances in such areas as genomics, proteomics, targeted therapeutics, personalized medicine, and stem cell biology, we can expect to see a vast array of new breakthrough products developed for rare disorders in the next 25 years—and we need to make sure that such products will be available and accessible for the patients with these disorders who so badly need them.

----------

Media contacts:

Christina "Tina" Pohlman President, 608-782-2626, www.apsfa.org, apsfa@apsfa.org

Mary Dunkle, National Organization for Rare Disorders, (203) 744-0100, mdunkle@rarediseases.org

Peggy Heller, Vox Medica, Inc., (908) 918 0092, pheller@voxmedica.com

New On MissionFish This Week!

There are items on MissionFish right now some of you may be interested in purchasing.

Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582


8x10 AcrYLic PAINTing whimsical SnowMan Christmas tree
slim80craft2
Starting Bid: $12.99
15% donated to the APSFA
16h 29m time left to bid as of this post


8x10 Oil Painting Country Cow Chicken Farm Xmas
slim80craft2
Starting BidL $12.99
10% donated to the APSFA
2d 15h 21m time left to bid as of this post


12x16 AcrYLic PAINTing of a single yellow rose
slim80craft2
Starting Bid: $15.99
15% donated to the APSFA
4d 4h 44m time left to bid as of this post

12x16 OIL PAINTing of a colorful Winter Landscape
slim80craft2
Starting BidL $15.99
15% donated to the APSFA
4d 15h 56m time left to bid as of this post


8x10 Acrylic Painting Landscape Water Bridge Xmas
slim80craft2
Starting Bid: $12.99
10% donated to the APSFA
6d 16h 47m time left to bid as of this post

Last Minute Shopping? Need Ideas?

Here is a Cafe Press Coupon to help with your order:

Save $10 when you spend $50 or more! ----------------------------- Enter the coupon code HOLIDAY2007 when checking out. ----------------------------- Coupon expires 12/15/07... so hurry! This is really a good coupon. Perfect time to purchase the log book, a t-shirt and tote bag. Support APS Awareness & the APSFA! It is also time to start think of holiday shopping! 100% of the profits from these products will go to the APS Foundation of America, Inc. To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation Brought to you by the APS Foundation of America

2007 APSFA Giving Tree!

2007 APSFA Giving Tree!




Last year's Giving Tree was such a success that we've brought it back just in time for the holidays! The holiday Giving Tree at the APS Foundation of America, Inc holds a special meaning for the members of the APSFA and the community it serves.

Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. You can pick out your special ornament below and for a donation we will put your ornament on our Giving Tree. We hope that by the new year, our Giving Tree will be fully decorated!

Your donation will enable the APSFA to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome and as always, your donation is tax deductible.

Any donations made in memory or in honor of a loved one will have a special ornament and package so they stand out from the rest. All donor names will be listed under the tree as the ornament donations come in.

To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm

*Exclusive* 2007 APSFA Holiday Ornament

*Exclusive* 2007 APSFA Holiday Ornament





It's that time of year!! Our Exclusive 2007 APSFA snowflake ornament is available for purchase. The ornaments are made of porcelain and feature our one of a kind snowflake design. These are dated and are only going to be available until Dec 31, 2007 so purchase yours while you can!

The ornaments are $7.99 each with $2.00 of that going right back to the APSFA.
Click HERE to purchase our Exclusive 2007 Holiday Snowflake Ornament: http://www.cafepress.com/apsfoundation




Brought to you by the APS Foundation of America

Here is a Cafe Press Coupon to help with your order:

Save $10 when you spend $50 or more!
-----------------------------
Enter the coupon code
HOLIDAY2007
when checking out.
-----------------------------
Coupon expires 12/15/07... so hurry!

This Weekend on MissionFish

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

8x10 AcrYLic PAINTing of 3 Pears by Savage

slim80craft2

Starting Bid: $12.99
15% donated to the APSFA
2d 12h 37m left to bid as of this post

8x10 AcrYLic PAINTing whimsical SnowMan Christmas tree

slim80craft2

Starting Bid: $12.99
15% donated to the APSFA
4d 14h 21m left to bid as of this post

8x10 Oil Painting Country Cow Chicken Farm Xmas

slim80craft2

Starting Bid: $12.99
10% donated to the APSFA
6d 13h left to bid as of this post

This was just added to MissionFish.

This was just added to MissionFish.

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

8x10 AcrYLic PAINTing of 3 Pears by Savage

slim80craft2

Starting Bid: $12.99

15% donated to the APSFA

5d 10h 56m left to bid as of this post.

What is New On MissionFish This Week?

There are items on MissionFish right now some of you may be interested in purchasing.

Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582




AcrYLic PAINTing by Savage STuffed ANImal FRiends Xmas
slim80craft2
Starting Bid: $17.99
15% donation to the APSFA
6d 15h 35m left to bid as of this post


AcRyLIc PAINTing BluE PinK LavendeR Landscape Xmas
slim80craft2
Starting bid: $17.99
10% donation to the APSFA
6d 15h 53m left to bid as of this post



AcRyLiC PaINTinG Savage ReD GOld SuNSet Landscape Xmas
slim80craft2
Starting Bid: $17.99
10% donation to the APSFA
6d 16h 2m left to bid as of this post



Acrylic Painting Landscape Water Bridge trees - Xmas
slim80craft2
Starting Bid: $17.99
10% donation to the APSFA
6d 16h 24m left to bid as of this post



Nativity Hallmark Keepsake Ornament 1996 xmas MIB
slim80craft2
Starting Bid: $5.99
15% donation to the APSFA
6d 16h 40m left to bid as of this post

Volume 7 of Our Newsletter, "Antiphospho...What?" Volume 7 of Our Newsletter, "Antiphospho...What?"

Volume 7 of Our Newsletter, "Antiphospho...What?" is available for download!

The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol7Fall2007.pdf

The next volume will be coming out in February, 2008. Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future. We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below. We are open to any suggestions.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm Thank you for your continued support.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS