Photo courtesy of Courtney Humphries in the Lupus Foundation of America's Kansas Chapter.
October 31, 2007
Happy Halloween!
Latest Updates Regarding Lupus Advocacy on Capitol Hill
Hello. My name is Sara Chang and I would like to give you some updates on a few things the LFA Government Relations Department is working on with Capitol Hill. Congress is hoping to recess for the year just before Christmas, so we have about a month to get our voices heard!
Labor-HHS-Education Appropriations Bill
Regarding the Labor-Health and Human Services-Education Appropriations bill (Labor-HHS-Education), the Senate Appropriations Committee has included funds for the Office of Women’s Health to develop and implement a lupus awareness and education campaign aimed at reaching health care professionals and the general public. The Committee has also recommended increasing funding to expand lupus epidemiology research at the Centers for Disease Control and Prevention.
The House of Representatives passed its version of the Labor-HHS-Education Appropriations legislation on July 19th. The Senate passed its version on October 23rd. The Senate and House of Representatives hope to negotiate the difference between the two bills on November 1st. The Senate has mentioned it hopes the Labor-HHS-Education Appropriations bill will be the one of the first of the 12 appropriations bills sent to the President.
Lupus REACH Amendments
The Lupus Research, Education, Awareness, Communications, and Healthcare (REACH) Amendments legislation, S.1359/H.R.1192, is extremely important to people with lupus, their families, and physicians. The Lupus REACH Amendments was introduced in the Senate by Senator Patty Murray (D-WA) and Senator Robert Bennett (R-UT) and it was introduced in the House of Representatives by Congressman Kendrick Meek (D-FL) and Congresswoman Ileana Ros-Lehtinen (R-FL).
S. 1359/H.R. 1192 will help our nation make considerable strides toward bridging the gaps in lupus research, education, and awareness. Health professionals and researchers will be able to significantly enhance the lives of those affected by lupus. Currently there are 67 cosponsors in the House and 15 in the Senate, but we need to have at least 100 in the House and 25 in the Senate by the end of the year!
Take action NOW: www.capwiz.com/lfa
Lupus Advocacy Day 2008
Some of you may have heard about Lupus Advocacy Day 2007. During the LFA’s 2007 Lupus Advocacy Day, 350 participants from 31 states met with 146 legislators. We expect the 2008 Lupus Advocacy Day to be even more influential!
The date has been set for Lupus Advocacy Day 2008. Join the LFA in Washington, DC March 10-11, 2008 and make your voice heard! Advocates and LFA members will travel to Capitol Hill to meet with Members of Congress.
Go to www.lupus.org/advocacy to sign up TODAY to become a lupus e-Advocate. Pass this information to everyone you know!
Enrollment for Medicare Part D
Lastly, Medicare Part D enrollment is starting soon. As you know, Medicare Part D is the prescription drug benefit resulting from the Medicare Modernization Act of 2003, which provides all Medicare beneficiaries with the option to add prescription drug coverage. You may sign up when you first become eligible for Medicare (three months before the month you turn age 65 until three months after you turn age 65). If you receive Medicare due to a disability, you can join from three months before to three months after your 25th month of cash disability payments.
The next opportunity to enroll in Medicare Part D will be from November 15, 2007 to December 31, 2007. If you are currently enrolled in a plan, now is also the time to check for any changes that might have been made to your plan! For more information go to http://www.cms.hhs.gov/center/openenrollment.asp
If you have any questions about what is happening on Capitol Hill that may affect people with lupus, please contact me, Sara Chang, at chang@lupus.org. Thank you!
Labor-HHS-Education Appropriations Bill
Regarding the Labor-Health and Human Services-Education Appropriations bill (Labor-HHS-Education), the Senate Appropriations Committee has included funds for the Office of Women’s Health to develop and implement a lupus awareness and education campaign aimed at reaching health care professionals and the general public. The Committee has also recommended increasing funding to expand lupus epidemiology research at the Centers for Disease Control and Prevention.
The House of Representatives passed its version of the Labor-HHS-Education Appropriations legislation on July 19th. The Senate passed its version on October 23rd. The Senate and House of Representatives hope to negotiate the difference between the two bills on November 1st. The Senate has mentioned it hopes the Labor-HHS-Education Appropriations bill will be the one of the first of the 12 appropriations bills sent to the President.
Lupus REACH Amendments
The Lupus Research, Education, Awareness, Communications, and Healthcare (REACH) Amendments legislation, S.1359/H.R.1192, is extremely important to people with lupus, their families, and physicians. The Lupus REACH Amendments was introduced in the Senate by Senator Patty Murray (D-WA) and Senator Robert Bennett (R-UT) and it was introduced in the House of Representatives by Congressman Kendrick Meek (D-FL) and Congresswoman Ileana Ros-Lehtinen (R-FL).
S. 1359/H.R. 1192 will help our nation make considerable strides toward bridging the gaps in lupus research, education, and awareness. Health professionals and researchers will be able to significantly enhance the lives of those affected by lupus. Currently there are 67 cosponsors in the House and 15 in the Senate, but we need to have at least 100 in the House and 25 in the Senate by the end of the year!
Take action NOW: www.capwiz.com/lfa
Lupus Advocacy Day 2008
Some of you may have heard about Lupus Advocacy Day 2007. During the LFA’s 2007 Lupus Advocacy Day, 350 participants from 31 states met with 146 legislators. We expect the 2008 Lupus Advocacy Day to be even more influential!
The date has been set for Lupus Advocacy Day 2008. Join the LFA in Washington, DC March 10-11, 2008 and make your voice heard! Advocates and LFA members will travel to Capitol Hill to meet with Members of Congress.
Go to www.lupus.org/advocacy to sign up TODAY to become a lupus e-Advocate. Pass this information to everyone you know!
Enrollment for Medicare Part D
Lastly, Medicare Part D enrollment is starting soon. As you know, Medicare Part D is the prescription drug benefit resulting from the Medicare Modernization Act of 2003, which provides all Medicare beneficiaries with the option to add prescription drug coverage. You may sign up when you first become eligible for Medicare (three months before the month you turn age 65 until three months after you turn age 65). If you receive Medicare due to a disability, you can join from three months before to three months after your 25th month of cash disability payments.
The next opportunity to enroll in Medicare Part D will be from November 15, 2007 to December 31, 2007. If you are currently enrolled in a plan, now is also the time to check for any changes that might have been made to your plan! For more information go to http://www.cms.hhs.gov/center/openenrollment.asp
If you have any questions about what is happening on Capitol Hill that may affect people with lupus, please contact me, Sara Chang, at chang@lupus.org. Thank you!
October 30, 2007
National Magazine seeks to Interview Woman with Lupus
The Lupus Foundation of America (LFA) is working with a reporter from a major national women's magazine who is developing a story about how women cope with a chronic disease. The magazine would like to include a person with lupus prominently in the story.
The magazine is looking for a woman, between the ages of 30 and 50, who has kept her lupus a secret from friends, family, or employer. She can be someone who has recently made her condition known or someone who is still keeping it a secret. However, to be included in the story, the individual selected must be willing to have her name and place of residence publicly identified (e.g. Jane Doe of Washington, DC).
If you meet these criteria and are willing to participate in an interview, please send an email NO LATER THAN 9:00 A.M. EASTERN TIME, FRIDAY, NOVEMBER 2. Your email must include the following information in your response:
Remember -- the deadline to respond is 9:00 a.m. Eastern time, on Friday, November 2.
The magazine is looking for a woman, between the ages of 30 and 50, who has kept her lupus a secret from friends, family, or employer. She can be someone who has recently made her condition known or someone who is still keeping it a secret. However, to be included in the story, the individual selected must be willing to have her name and place of residence publicly identified (e.g. Jane Doe of Washington, DC).
If you meet these criteria and are willing to participate in an interview, please send an email NO LATER THAN 9:00 A.M. EASTERN TIME, FRIDAY, NOVEMBER 2. Your email must include the following information in your response:
- Name
- Place of residency
- Age
- Daytime telephone number
- Email address (if different from the address used to reply)
- Short summary of your life with lupus: (e.g. type of lupus, when diagnosed, impact on your health)
- Reasons for keeping your lupus secret: (e.g. fear of losing a job, relationship, friends, being excluded from social activities)
Remember -- the deadline to respond is 9:00 a.m. Eastern time, on Friday, November 2.
October 29, 2007
Keeping a Lupus Flare at Bay
Doctors have identified healthy habits that can help you avoid triggering a lupus flare.
- Always take your medication as prescribed.
- Keep your doctor's appointments even if you are feeling well.
- Avoid taking sulfa drugs (sulfonomides) that are used to treat infections such as bronchitis and urinary tract infections.
- Limit your exposure to sunlight; apply sunscreen before going outside during the day, and wear sun-protective clothing and a wide-brimmed hat.
- Reduce your risk of infections.
- Get plenty of rest.
- Do not smoke.
October 25, 2007
Make 2008 the Best Year Ever
As the end of the year draws near, there's no better time to take stock of the past 12 months and begin to look ahead. Why not grab this opportunity to remind yourself of your accomplishments, look back on the challenges, and start planning to make 2008 the best year possible?
Give yourself credit. Write down the past year's achievements so you can see your strengths. Include small accomplishments, too: Even if you were too fatigued to work out every day, don't discount times you went for a walk after dinner. Many of our major goals are achieved through small steps.
Look at your weak spots. Look at the goals you couldn't quite reach; the problem might lie with your expectations. With lupus, it's crucial to pay attention to your physical and emotional needs, and those unmet goals might be a reality check.
Prioritize, prioritize, prioritize. Jot down what you consider most important—family, job, health -- and make those things a priority. Once you've made your list, arrange them in order of their importance to you -- and focus your resolutions on your values.
Keep it simple and upbeat. Break big resolutions into concrete, positive parts, so you can track your progress without beating yourself up. Instead of "Stop stressing out," try "Do meditation for 10 minutes on Monday." Rather than "Lose 20 pounds," aim for "Eat five servings of vegetables today." The more specific your goal, the more likely your chance of success.
Do your homework. Before committing your resolutions to heart, do a little research to see if they're realistic. A swimming program can be great for your health, but be sure to discuss such plans with your doctor and investigate the facilities near you. Doing so before you start will help prevent frustration and the feeling of failure down the road.
Track your successes -- and reward yourself for them! Keep a journal, mark a calendar, or touch base with a friend on a regular basis. When you’ve passed a milestone -- 14 days without a cigarette, say -- be sure to reward yourself for your efforts. Even a celebratory coffee break can help reinforce your success and keep you focused on your ultimate goals.
Taken from the Fall 2007 issue of Lupus Now. Written by Emily Wojcik
Give yourself credit. Write down the past year's achievements so you can see your strengths. Include small accomplishments, too: Even if you were too fatigued to work out every day, don't discount times you went for a walk after dinner. Many of our major goals are achieved through small steps.
Look at your weak spots. Look at the goals you couldn't quite reach; the problem might lie with your expectations. With lupus, it's crucial to pay attention to your physical and emotional needs, and those unmet goals might be a reality check.
Prioritize, prioritize, prioritize. Jot down what you consider most important—family, job, health -- and make those things a priority. Once you've made your list, arrange them in order of their importance to you -- and focus your resolutions on your values.
Keep it simple and upbeat. Break big resolutions into concrete, positive parts, so you can track your progress without beating yourself up. Instead of "Stop stressing out," try "Do meditation for 10 minutes on Monday." Rather than "Lose 20 pounds," aim for "Eat five servings of vegetables today." The more specific your goal, the more likely your chance of success.
Do your homework. Before committing your resolutions to heart, do a little research to see if they're realistic. A swimming program can be great for your health, but be sure to discuss such plans with your doctor and investigate the facilities near you. Doing so before you start will help prevent frustration and the feeling of failure down the road.
Track your successes -- and reward yourself for them! Keep a journal, mark a calendar, or touch base with a friend on a regular basis. When you’ve passed a milestone -- 14 days without a cigarette, say -- be sure to reward yourself for your efforts. Even a celebratory coffee break can help reinforce your success and keep you focused on your ultimate goals.
Taken from the Fall 2007 issue of Lupus Now. Written by Emily Wojcik
October 22, 2007
Third Annual Skate for a Friend: Raising Awareness and Funding for Lupus Research
The Third Annual Skate for a Friend recently took place in Bayonne, New Jersey, with all proceeds from the event being donated to the Lupus Foundation of America and Hospital for Special Surgery.
How did the Skate for a Friend come to be?
Four years ago, Una-Marie Antczak, a member of the Bayonne Figure Skating Club, was diagnosed with lupus at the age of 12. Una-Marie had been very ill before a diagnosis was made. Since that time, she has been treated by Dr. Lehman at the Hospital for Special Surgery in New York where she is still receiving chemotherapy to treat the disease. Currently, her disease is "quiet" and Una-Marie leads a very normal life, where she remains very active in raising awareness for lupus, as well as raising money for lupus research.
Una's love for skating and desire to help others inspired her to raise money through skating. And thus, the event was born.
When she's not skating, Una-Marie is a busy young lady. She has been honored with the Bayonne Rotary Award, The Jersey Journal Teen Hero Award, and the Kohl’s Kids Who Care Award. She also took part in launching the purple wristbands with the Lupus Foundation of America that say "Someone You Know Has Lupus."
Thank you for all your efforts, Una-Marie. The LFA hopes your Third Annual Skate for a Friend was a success!
Photo tagline (left to right): Dr. Thomas Lehman, Olympic Gold Medalist Kerri Strug, Aiden Gallagher, Una-Marie Antczak
How did the Skate for a Friend come to be?
Four years ago, Una-Marie Antczak, a member of the Bayonne Figure Skating Club, was diagnosed with lupus at the age of 12. Una-Marie had been very ill before a diagnosis was made. Since that time, she has been treated by Dr. Lehman at the Hospital for Special Surgery in New York where she is still receiving chemotherapy to treat the disease. Currently, her disease is "quiet" and Una-Marie leads a very normal life, where she remains very active in raising awareness for lupus, as well as raising money for lupus research.
Una's love for skating and desire to help others inspired her to raise money through skating. And thus, the event was born.
When she's not skating, Una-Marie is a busy young lady. She has been honored with the Bayonne Rotary Award, The Jersey Journal Teen Hero Award, and the Kohl’s Kids Who Care Award. She also took part in launching the purple wristbands with the Lupus Foundation of America that say "Someone You Know Has Lupus."
Thank you for all your efforts, Una-Marie. The LFA hopes your Third Annual Skate for a Friend was a success!
Photo tagline (left to right): Dr. Thomas Lehman, Olympic Gold Medalist Kerri Strug, Aiden Gallagher, Una-Marie Antczak
October 19, 2007
Someone You Know Has Lupus
Came across yet another cool blog I wanted to share with you. It’s very "crafty." The blog, ScrumDillyDilly, is written by a woman who describes herself as " ... a returning college student, a crafter, a homemaker. a friend, a wife, a grand daughter, a dork, a collector of kitsch and a baker of sweets."
The blogger's mom was diagnosed with lupus years ago. And at the time of diagnosis, her mom was told she had two years to live. While her mom did live for another 25 years, she was never able to work and the multiple medications she took compromised her immune system even more. In December 1999 her mom passed away.
So to honor her mother and to support everyone who has lupus – and since October is Lupus Awareness Month (though that will be changing in the near future) – she is selling an assortment of handmade purple crafts (including gnomes, cozies and gloves) in her Etsy shop. All proceeds from the sales will be donated to lupus research.
Take a moment to check out ScrumDillyDilly's Etsy shop to see if any of these items tickle your fancy.
If you’re aware of any lupus-related blogs, or cool fund-raising events, or websites that you think I might want to know about, please feel free to share it with me at davis@lupus.org.
Until next time, Wick
The blogger's mom was diagnosed with lupus years ago. And at the time of diagnosis, her mom was told she had two years to live. While her mom did live for another 25 years, she was never able to work and the multiple medications she took compromised her immune system even more. In December 1999 her mom passed away.
So to honor her mother and to support everyone who has lupus – and since October is Lupus Awareness Month (though that will be changing in the near future) – she is selling an assortment of handmade purple crafts (including gnomes, cozies and gloves) in her Etsy shop. All proceeds from the sales will be donated to lupus research.
Take a moment to check out ScrumDillyDilly's Etsy shop to see if any of these items tickle your fancy.
If you’re aware of any lupus-related blogs, or cool fund-raising events, or websites that you think I might want to know about, please feel free to share it with me at davis@lupus.org.
Until next time, Wick
October 17, 2007
2008 Lupus Advocacy Day -- Save the Date!
Join the Lupus Foundation of America (LFA) in Washington, DC on March 10-11, 2008 for the LFA's annual Lupus Advocacy Day.
Advocates and LFA members will travel together to Capitol Hill to meet with Members of Congress. Our goal is to personally inform them how debilitating lupus can be, and urge them to allocate more funds for lupus research and education. Bring your friends and family. The more representation we have, the stronger the message we can send to Congress. Your participation in our 2008 Lupus Advocacy Day affects the decisions made by our legislators. Members of Congress are greatly influenced by the personal stories of their constituents.
The LFA 2007 Lupus Advocacy Day brought 350 participants from 31 states who met with 146 legislators. We expect the 2008 Lupus Advocacy Day to be even more influential. Together we will help people who are affected by this debilitating disease!
Are you interested in becoming an e-Advocate for the Lupus Foundation of America? If so, sign up to be an e-Advocate here.
Make your voice heard!
Advocates and LFA members will travel together to Capitol Hill to meet with Members of Congress. Our goal is to personally inform them how debilitating lupus can be, and urge them to allocate more funds for lupus research and education. Bring your friends and family. The more representation we have, the stronger the message we can send to Congress. Your participation in our 2008 Lupus Advocacy Day affects the decisions made by our legislators. Members of Congress are greatly influenced by the personal stories of their constituents.
The LFA 2007 Lupus Advocacy Day brought 350 participants from 31 states who met with 146 legislators. We expect the 2008 Lupus Advocacy Day to be even more influential. Together we will help people who are affected by this debilitating disease!
Are you interested in becoming an e-Advocate for the Lupus Foundation of America? If so, sign up to be an e-Advocate here.
Make your voice heard!
October 15, 2007
Lupus is “Going to the Dogs!”
So I recently became aware of another lupus-related blog that I wanted to share with you. It’s pretty cool, and it has a fun and creative twist. The blog, A Woman, A Wheaten, and a (very long) Walk, is written from the viewpoint of a dog. A Wheaten terrier named Landis to be exact.
Yes, you read that correctly.
Florida’s Cindy Coney – who has lupus – and her one year old Wheaten terrier Landis are taking on lupus by walking 916 miles around their neighborhood to raise money for lupus research. They intend to complete this impressive feat by March 10, 2008.
Why 916 miles, and why by March 10, 2008? Well, it’s 916 miles from their home in Tampa, Florida to the steps of Capitol Hill in Washington, DC. And on March 10, 2008, the Lupus Foundation of America (LFA) will host its annual Advocacy Day, by having hundreds of lupus patients and their families visit their senators and representatives in DC to inform them about lupus, and to ask for their support.
Already a few weeks into this endeavor, Landis has “pawed” several blog entries. Landis knows first-hand how important lupus, and all efforts to find a cure for lupus, are to his mom, Cindy. After all, she’s on the Board of Directors for the LFA.
Definitely follow their progress on Landis’ blog. And if you’re able to offer any financial support, you can do so here.
We wish Landis and Cindy much success!
Until next time …
Wick
Yes, you read that correctly.
Florida’s Cindy Coney – who has lupus – and her one year old Wheaten terrier Landis are taking on lupus by walking 916 miles around their neighborhood to raise money for lupus research. They intend to complete this impressive feat by March 10, 2008.
Why 916 miles, and why by March 10, 2008? Well, it’s 916 miles from their home in Tampa, Florida to the steps of Capitol Hill in Washington, DC. And on March 10, 2008, the Lupus Foundation of America (LFA) will host its annual Advocacy Day, by having hundreds of lupus patients and their families visit their senators and representatives in DC to inform them about lupus, and to ask for their support.
Already a few weeks into this endeavor, Landis has “pawed” several blog entries. Landis knows first-hand how important lupus, and all efforts to find a cure for lupus, are to his mom, Cindy. After all, she’s on the Board of Directors for the LFA.
Definitely follow their progress on Landis’ blog. And if you’re able to offer any financial support, you can do so here.
We wish Landis and Cindy much success!
Until next time …
Wick
October 12, 2007
Opining Online
When you have a lifelong disease like lupus, finding the right doctor can be a true blessing. We need someone who's knowledgeable about lupus, but we also want someone who knows how to listen and really hear us. In the Spring 2008 issue of Lupus Now, we want to print your answers to this question:
"What is the most valuable advice a doctor ever gave you about living with lupus?"
Email your response to LupusNow@lupus.org. Make sure your answer is 50 words or less. Please include your first name and last name in the email, and write "valuable doctor's advice" in the subject line of your email.
We'll print as many of the responses as we can. Your deadline is November 9!
"What is the most valuable advice a doctor ever gave you about living with lupus?"
Email your response to LupusNow@lupus.org. Make sure your answer is 50 words or less. Please include your first name and last name in the email, and write "valuable doctor's advice" in the subject line of your email.
We'll print as many of the responses as we can. Your deadline is November 9!
October 11, 2007
Seeking Recipes for Lupus Now© Magazine's Healthful Eating Column
Hi ... I'm Jenny Allan, the editor of Lupus Now magazine. And I'd like your help!
In honor of Mother’s Day, we want you to send us the healthiest recipe your mother ever gave you! Along with the recipe, please include your name and city/state of residence, as well as your mother’s name and city/state of residence.
You can either email your recipe to me at allan@lupus.org or you can mail your recipe(s) to me at:
We’ll print LFA staff favorites in the Spring 2008 issue of Lupus Now, and post all submissions on the Lupus Now Website.
Remember: we'e looking for the healthiest recipes, so save the Peanut Butter Fudge Cake for holiday gift bags!
Can't wait to see all these recipes!!
In honor of Mother’s Day, we want you to send us the healthiest recipe your mother ever gave you! Along with the recipe, please include your name and city/state of residence, as well as your mother’s name and city/state of residence.
You can either email your recipe to me at allan@lupus.org or you can mail your recipe(s) to me at:
Jenny Allan
Lupus Foundation of America
2000 L Street, NW
Suite 710
Washington DC, 20036
We’ll print LFA staff favorites in the Spring 2008 issue of Lupus Now, and post all submissions on the Lupus Now Website.
Remember: we'e looking for the healthiest recipes, so save the Peanut Butter Fudge Cake for holiday gift bags!
Can't wait to see all these recipes!!
October 10, 2007
Relationships & Lupus: Today's Webchat
Morning all ... wanted to give you a quick reminder about the Lupus Foundation of America's October Webchat.
This afternoon, Wednesday, October 10, at 3 p.m. EDT, Dr. Robert Phillips, the founder and director for the Center for Coping, will host a Webchat on Relationships & Lupus.
Dr. Robert H. Phillips is a licensed psychologist who has been in private practice since 1975 and who has, throughout his career, published and spoken widely on coping with physical ailments and other psychological topics. He has presented more than 400 papers and talks at seminars, conventions, and meetings throughout the United States and internationally.
Dr. Phillips has published more than 30 books, including the very popular Coping with Lupus, which is available for purchase in Lupus Shop, the LFA's redesigned and recently relaunched online store.
We hope you can join us for today’s Webchat. It should be interesting.
Until next time,
Wick
This afternoon, Wednesday, October 10, at 3 p.m. EDT, Dr. Robert Phillips, the founder and director for the Center for Coping, will host a Webchat on Relationships & Lupus.
Dr. Robert H. Phillips is a licensed psychologist who has been in private practice since 1975 and who has, throughout his career, published and spoken widely on coping with physical ailments and other psychological topics. He has presented more than 400 papers and talks at seminars, conventions, and meetings throughout the United States and internationally.
Dr. Phillips has published more than 30 books, including the very popular Coping with Lupus, which is available for purchase in Lupus Shop, the LFA's redesigned and recently relaunched online store.
We hope you can join us for today’s Webchat. It should be interesting.
Until next time,
Wick
October 09, 2007
The Lupus Now Spring 2008 Issue Needs You!
Hey all ...
The Lupus Foundation of America's publications staff is already hard at work on the Spring 2008 issue of Lupus Now. On behalf of a very grateful editor, I'm putting out a call to action. We are seeking people with lupus to interview for the following stories.
We look forward to hearing from you.
Until next time, Wick
The Lupus Foundation of America's publications staff is already hard at work on the Spring 2008 issue of Lupus Now. On behalf of a very grateful editor, I'm putting out a call to action. We are seeking people with lupus to interview for the following stories.
- Family activities for children with lupus; we want to talk to parents and children
- Living with cutaneous lupus; we want to talk to people with hair loss, ulcers, calcinosis, vascular lesions, livedo reticularis, or palmer erythema
- Training for a new career when lupus makes it too difficult to perform current job duties
- Single parenting
- Creating a "healing garden" outdoors or a special place indoors that encompasses nature
- Getting exercise with active video games, like the new Wii system of sports games
We look forward to hearing from you.
Until next time, Wick
October 04, 2007
Lap 'Round the Lake for Lupus: The Kassie Biglow Story
In my short time here at the LFA, I’ve become aware of many touching stories. I wanted to share one of them.
Mary Katherine “Kassie” Biglow, a young wife and mother, passed away from complications of lupus in October 2004, one week before her 31st birthday. Kassie was a close friend and personal care attendant for David Lytle, who had suffered a spinal cord injury.
Kassie's death spurred Mr. Lytle to action. He nominated the Lupus Foundation of America to receive proceeds from an eBay auction of the NBC TODAY Show's Green Room book. The Green Room book includes signatures, notes and doodles from celebrities, political figures, newsmakers and other prominent guests who appeared on the TODAY Show. The LFA was selected as the recipient charity and all proceeds from the auction went to support the LFA’s national lupus research program. A yearly research grant in Kassie’s name has been established.
Sadly, David Lytle died unexpectedly in June 2007. A special tribute will take place to honor his memory at this year's Lap 'Round the Lake for Lupus.
What is Lap 'Round the Lake for Lupus, you ask?
Lap 'Round the Lake for Lupus serves a two-fold purpose. It provides family and friends a way to honor the life of Kassie Biglow, and it does so in a location that was near and dear to her heart. Second, it shines a much needed light on the debilitating effects of lupus.
If you live in the Ohio area and are able to, take part in the 3rd Annual Lap 'Round the Lake for Lupus, which will take place Saturday, October 13, 2007 at the Boat House on Silver Lake Blvd., in Silver Lake Village, Ohio. Registration begins at 8 a.m. and the walk / run begins at 9 a.m.
Pre-registration is encouraged. To pre-register, please send your name and email address to Maureen & Travis Michalak at travmo@columbus.rr.com.
Donations will be accepted the day of the event. You can also send donations in ahead of time. Any questions regarding donations should be sent to Joe McMullin, Sr. (Kassie's dad) at jmcmullin@neo.rr.com.
Last year, this event raised more than $10,000, with the money going toward research.
Until next time,
Wick
Mary Katherine “Kassie” Biglow, a young wife and mother, passed away from complications of lupus in October 2004, one week before her 31st birthday. Kassie was a close friend and personal care attendant for David Lytle, who had suffered a spinal cord injury.Kassie's death spurred Mr. Lytle to action. He nominated the Lupus Foundation of America to receive proceeds from an eBay auction of the NBC TODAY Show's Green Room book. The Green Room book includes signatures, notes and doodles from celebrities, political figures, newsmakers and other prominent guests who appeared on the TODAY Show. The LFA was selected as the recipient charity and all proceeds from the auction went to support the LFA’s national lupus research program. A yearly research grant in Kassie’s name has been established.
Sadly, David Lytle died unexpectedly in June 2007. A special tribute will take place to honor his memory at this year's Lap 'Round the Lake for Lupus.
What is Lap 'Round the Lake for Lupus, you ask?
Lap 'Round the Lake for Lupus serves a two-fold purpose. It provides family and friends a way to honor the life of Kassie Biglow, and it does so in a location that was near and dear to her heart. Second, it shines a much needed light on the debilitating effects of lupus.
If you live in the Ohio area and are able to, take part in the 3rd Annual Lap 'Round the Lake for Lupus, which will take place Saturday, October 13, 2007 at the Boat House on Silver Lake Blvd., in Silver Lake Village, Ohio. Registration begins at 8 a.m. and the walk / run begins at 9 a.m.
Pre-registration is encouraged. To pre-register, please send your name and email address to Maureen & Travis Michalak at travmo@columbus.rr.com.
Donations will be accepted the day of the event. You can also send donations in ahead of time. Any questions regarding donations should be sent to Joe McMullin, Sr. (Kassie's dad) at jmcmullin@neo.rr.com.
Last year, this event raised more than $10,000, with the money going toward research.
Until next time,
Wick
October 02, 2007
Flu and Pneumonia Season is Upon Us
As you may know, it is recommended that lupus patients receive a flu shot every year. Flu shots are considered to be safe and effective for people with lupus. Sometimes a shot or vaccine can trigger a flare, but this usually involves several days of fevers and muscle aches. Frequently people with lupus tolerate vaccines without any side effects.
One caution. The inhaled flu prevention treatment (flu-mist) is not recommended for people with lupus or for their family or close contacts because it contains weakened (but live) virus. It would not be safe for people with any immune-compromising disorder or those taking any immune suppressing treatments.
The pneumonia shot (pneumococcal vaccine) is also recommended for people with lupus. A second dose should be given five years after the first dose. This vaccine can help to prevent most, but not all, kinds of pneumonia.
As always, lupus patients should always talk with their doctors before receiving any vaccine, especially if you are pregnant or have had certain types of allergic reactions in the past.
Have a healthy fall season!
One caution. The inhaled flu prevention treatment (flu-mist) is not recommended for people with lupus or for their family or close contacts because it contains weakened (but live) virus. It would not be safe for people with any immune-compromising disorder or those taking any immune suppressing treatments.
The pneumonia shot (pneumococcal vaccine) is also recommended for people with lupus. A second dose should be given five years after the first dose. This vaccine can help to prevent most, but not all, kinds of pneumonia.
As always, lupus patients should always talk with their doctors before receiving any vaccine, especially if you are pregnant or have had certain types of allergic reactions in the past.
Have a healthy fall season!
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