Members of Congress received more than 2500 emails, messages, and stories from lupus advocates across the country during the Lupus Foundation of America’s Thirteenth Annual Advocacy Day held February 28-March 1, 2011. More than 200 individuals met in person with their Congressional Representatives and staff on Capitol Hill, and countless others called, wrote letters, or helped spread the word online through Facebook and Twitter, to raise awareness about the need for increased federal funding for lupus research, education, and awareness programs.
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Showing posts with label Advocacy Day. Show all posts
Showing posts with label Advocacy Day. Show all posts
March 04, 2011
March 01, 2011
LFA's 2011 Advocacy Day is Today!
Can't make it to Washington, DC? Here's what you can do to have your voice heard TODAY!
Watch a video from the LFA's Government Relations Committee Chair and learn more about how you can make your voice heard today.
Visit www.lupus.org/advocacyday for more information and more ideas about how to spread the word.
Watch a video from the LFA's Government Relations Committee Chair and learn more about how you can make your voice heard today.
Visit www.lupus.org/advocacyday for more information and more ideas about how to spread the word.
February 09, 2011
Guest Blog: The Importance of Advocacy Day
Today's blog comes from Mary Jane Goodman-Giddens, a past participant in the Lupus Foundation of America's Advocacy Day. She is a mother of six, two of whom are living with lupus. To join her and others at LFA's Advocacy Day 2011, register today at www.lupus.org/advocacyday.
Advocacy Day 2011 is one of which I plan to be a part. The fight against the disease of lupus is an action many, as those in my family, take ever so seriously. As with many, it was a fight we were drawn into without warning. Those living with lupus, acting as caregivers or are loved ones of those with lupus feel a natural inclination to work to find a cure for the illness with which we have become all to familiar.
As a participant in Advocacy Day 2010, I was privileged to meet with members of our government and voice my concerns for those suffering. Meeting with these men and women was a chance to speak to the need for more funding for lupus research. That day in March afforded me the time to speak for increased funding for awareness and education for the public and physicians. As an advocate, each of us puts a face to this disease, a crucial part of the day's work. Those with whom we communicate can glimpse the frustration and the suffering that is experienced by taking medicines that are toxic once the disease is correctly diagnosed. They can hear of the pain brought by the disease itself. To be able to reach our U.S. Senators and Representatives in this capacity aids the fight for a cure. These meetings work towards a better quality of life for lupus sufferers.
Perhaps for me, meeting other attendees was of equal importance. Emotionally, it was quite striking to sit with so many affected by lupus sitting in one large hall on the day set aside for training and preparation. It was at once impressive to witness such strength so many carried as patients of lupus and at the same moment distressing to realize that one disease had hurt and challenged so many in so many varied ways, affecting nearly every organ system of the body.
One woman stood out to me in particular. She had left the hospital to attend Advocacy Day in Washington, D.C. In pain, she traveled and told her story. Her strength and courage, and those of others just as she, serve as an inspiration to me.
I plan to be at Advocacy Day 2011.
Mary Jane Goodman-Giddens
Mother of six; two living with lupus
January 31, 2011
Video: Lupus Foundation of America's Advocacy Day
Reminder - Early bird registration and the special hotel rate for LFA's Advocacy Day ends February 4th! Make sure you take advantage and register for Advocacy Day today! In the meantime, watch the video below to hear past advocacy day participants explain why they feel it was one of the best experiences of their lives and why they want to keep coming back year after year.
December 22, 2010
Come to the Lupus Foundation of America's Advocacy Day Feb 28 - Mar 1!
The LFA’s 2011 Advocacy Day Program will begin on February 28th with a training session and reception. You will get a chance to meet other people who have been touched by lupus and discuss the LFA’s Advocacy Message.
On March 1st, we will travel to Capitol Hill to meet with Members of Congress and inform them about our legislative priorities and share our personal stories about lupus.
To register or for more information, please visit www.lupus.org/advocacyday.
March 26, 2010
Lupus Foundation of America Creates 2010 Advocacy Day Video
On March 16, 2010, the need to bridge the gaps in lupus research and understanding was communicated by lupus advocates through close to 2,000 emails and personal visits to Members of Congress and their staff during the Lupus Foundation of America’s (LFA) Twelfth Annual Advocacy Day.
In this video created by the LFA, lupus advocates from around the country describe their experiences at the LFA's 2010 Advocacy Day on Capitol Hill.
If you are unable to watch the video in the blog, you can watch it here.
In this video created by the LFA, lupus advocates from around the country describe their experiences at the LFA's 2010 Advocacy Day on Capitol Hill.
If you are unable to watch the video in the blog, you can watch it here.
March 22, 2010
Guest Blogger Kesha Dan Talks about Her Experience at LFA's 2010 Advocacy Day
I never would have thought that I would feel so blessed in just a few short days. I did not know what to expect when I was invited to attend the LFA’s Advocacy Day 2010. I will honestly say now that it was the best experience I have ever had. I flew in from Denver and was so tired when I got off the plane, but excited to see my fellow lupies & to be in DC.I went to register for Advocacy Day, and was greeted by two great familiar faces which was a highlight for me. I was immediately relieved when I walked in the lunch that was provided by the LFA. I am a social person who loves to meet others. I met so many others who are able to share so many of the daily struggles that I also deal with, and I know that I will always keep in touch with them. This bonding process was incredible.
The day was great with training for us to be prepared for Capitol Hill and the evening with more guest speakers was even better. My highlight of the night came at around 10:30 p.m. when the alarm at the L’Enfant Plaza Hotel went off and I walked down 15 flights of stairs out in the rain with a sweat suit & dress shoes on. All of us out in the grass with the rain were a sight to see!! I still giggle about this!!!
I will admit that I was very nervous about my meetings on Capitol Hill, and how they were going to go. I can honestly say that it was one of the most exciting experiences I have ever had. We presented each staff representative with an informational folder and a lupus bracelet for them to band together with us. Everyone greeted us with smiles. We informed them about the lupus facts and I told them my personal story, which touched each of them. It was amazing because only I can tell my story and they were willing to listen. This kept me at my comfort level, so explaining why we need their support for more funding for education and awareness programs was a piece of cake. We need it, so asking for it is the easy part. Even if it takes a few more years for us to reach our goals ... just to know that I had a hand in asking & sharing my personal story meant more to me than anything. I look forward to attending next year.
I am now taking the time out to thank each & every staff member at the Lupus Foundation of America for being the strength for those of us with lupus. The LFA puts together some amazing events to help with our continued fight. My heart is content knowing that we are supported.
Kesha Dan
A fighter with lupus “Smiling Everyday”
Photo: Kesha Dan, lupus advocate from Denver, Colorado, on Capitol Hill for the LFA's 2010 Advocacy Day
March 18, 2010
Reminder: Support the Online Portion of LFA's Advocacy Day thru Friday, March 19
The LFA needs you to make your voice heard!
Through Friday, March 19, we're asking everyone to go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action."
Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.
Please ask your family, friends and co-workers to take just a few moments to also email / speak to their Members of Congress, and tell them why additional funding for lupus research is so important.
Together, we can change the future of those affected by lupus.
Through Friday, March 19, we're asking everyone to go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action."
Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.
Please ask your family, friends and co-workers to take just a few moments to also email / speak to their Members of Congress, and tell them why additional funding for lupus research is so important.
Together, we can change the future of those affected by lupus.
March 15, 2010
Band Together for Lupus on Tuesday, March 16 -- Make Your Voice Heard on Capitol Hill
Tomorrow, March 16 is the LFA’s 12th Annual Advocacy Day on Capitol Hill.
Hundreds of lupus advocates from around the country have come together to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.
Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
Make Your Voice Heard
Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action." Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.
Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important.
The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.
Together, we can change the future of those affected by lupus. Thank you and we look forward to an amazing day on Capitol Hill on Tuesday, March 16.
Hundreds of lupus advocates from around the country have come together to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.
Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
Make Your Voice Heard
Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action." Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.
Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important.
The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.
Together, we can change the future of those affected by lupus. Thank you and we look forward to an amazing day on Capitol Hill on Tuesday, March 16.
March 12, 2010
Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home
As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.
Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
Here’s what you can do from home.
Remember, we really need you to make your voices heard on Tuesday the 16th.
Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
Here’s what you can do from home.
- Send an email, call, or write your Congressman or Senator.
- Raise awareness by sending an ecard.
- Spread the word on Facebook and Twitter, or through your blog.
Remember, we really need you to make your voices heard on Tuesday the 16th.
February 17, 2010
Discounted Room Rate for LFA's 2010 Advocacy Day Only Guaranteed Thru Friday, February 19
Reminder: LFA's 2010 Advocacy Day on Capitol Hill will take place March 15-16, 2010. Spaces are filling up, so make sure you register for this event soon.
Deadline Approaching for Discounted Hotel Reservations
Here's an incentive to get you to register today -- the discounted room rate for Advocacy Day is only guaranteed through Friday, February 19. You'll need to hurry as it's your last chance to get a hotel room at a cheaper price!
Book your hotel room by Friday, February 19, and save money!
Deadline Approaching for Discounted Hotel Reservations
Here's an incentive to get you to register today -- the discounted room rate for Advocacy Day is only guaranteed through Friday, February 19. You'll need to hurry as it's your last chance to get a hotel room at a cheaper price!
Book your hotel room by Friday, February 19, and save money!
January 19, 2010
Lupus Foundation of America Collaborates with Federal Agencies and the U.S. Surgeon General's Office to Expand Medical Education on Lupus
Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities. The meeting, held at the American College of Rheumatology offices in Atlanta, Georgia from January 12–14, 2010, was facilitated by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), and Office of Minority Health (OMH).
According to an LFA survey, a person waits on average three years and visits four doctors before receiving an accurate diagnosis of lupus. More than 90 percent of people with lupus are women, and it is two to three times more common among African Americans, Hispanics, Asian Americans, and Native Americans. Physician and health care provider education is critical to improving the early diagnosis and management of lupus, and ultimately preventing the life-threatening consequences of the disease, particularly among those most at-risk for the disease.
An estimated $1.6 million is available for the initiative entitled, "Eliminating Disparities in Lupus Through Education and Training for Health Professionals" (EDLET/HP), which ultimately seeks to expand and promote the utilization of more comprehensive lupus curricula in medical and nursing schools, and among health care professionals and professional associations.
It is estimated that 80 percent of Americans know little or nothing about lupus. For far too long there have been limited resources to address the patient, public, and professional education gaps in lupus. In part, the first-ever Ad Council public awareness campaign on lupus sponsored by the OWH launched last year began to address the long-standing need to raise awareness and close the gap. The LFA is the Founding Partner on the campaign, "Could I Have Lupus?" which is directed at those most at-risk for developing the disease, and urges individuals who may be experiencing symptoms to ask their doctor about lupus. The EDLET/HP initiative is the health care professional counterpart to the Ad Council campaign.
"The LFA commends the Office of Minority Health and Office on Women’s Health for the foresight in developing these initiatives," said Sandra C. Raymond, LFA President and CEO. "We also want to thank lupus advocates across the United States for bringing to Congressional attention the urgent need for comprehensive patient, public, and professional education programs on lupus."
This year, the LFA will be hosting its seventh annual Advocacy Day program in Washington, DC from March 15-16, 2010. It is an opportunity for individuals to educate Members of Congress about lupus, and encourage them to support more funding for lupus research and education programs. To learn more Advocacy Day or to register, visit www.lupus.org/advocacyday.
According to an LFA survey, a person waits on average three years and visits four doctors before receiving an accurate diagnosis of lupus. More than 90 percent of people with lupus are women, and it is two to three times more common among African Americans, Hispanics, Asian Americans, and Native Americans. Physician and health care provider education is critical to improving the early diagnosis and management of lupus, and ultimately preventing the life-threatening consequences of the disease, particularly among those most at-risk for the disease.
An estimated $1.6 million is available for the initiative entitled, "Eliminating Disparities in Lupus Through Education and Training for Health Professionals" (EDLET/HP), which ultimately seeks to expand and promote the utilization of more comprehensive lupus curricula in medical and nursing schools, and among health care professionals and professional associations.
It is estimated that 80 percent of Americans know little or nothing about lupus. For far too long there have been limited resources to address the patient, public, and professional education gaps in lupus. In part, the first-ever Ad Council public awareness campaign on lupus sponsored by the OWH launched last year began to address the long-standing need to raise awareness and close the gap. The LFA is the Founding Partner on the campaign, "Could I Have Lupus?" which is directed at those most at-risk for developing the disease, and urges individuals who may be experiencing symptoms to ask their doctor about lupus. The EDLET/HP initiative is the health care professional counterpart to the Ad Council campaign.
"The LFA commends the Office of Minority Health and Office on Women’s Health for the foresight in developing these initiatives," said Sandra C. Raymond, LFA President and CEO. "We also want to thank lupus advocates across the United States for bringing to Congressional attention the urgent need for comprehensive patient, public, and professional education programs on lupus."
This year, the LFA will be hosting its seventh annual Advocacy Day program in Washington, DC from March 15-16, 2010. It is an opportunity for individuals to educate Members of Congress about lupus, and encourage them to support more funding for lupus research and education programs. To learn more Advocacy Day or to register, visit www.lupus.org/advocacyday.
January 11, 2010
Registration for LFA's 2010 Advocacy Day on Capitol Hill Now Open
Want to help generate more funds for lupus research and awareness?
The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.
Join lupus advocates in Washington, DC, Monday and Tuesday, March 15-16, 2010, as we introduce the Lupus Foundation of America's advocacy priorities for FY2011.
Register for the LFA's 2010 Advocacy Day today.
The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.
Join lupus advocates in Washington, DC, Monday and Tuesday, March 15-16, 2010, as we introduce the Lupus Foundation of America's advocacy priorities for FY2011.
Register for the LFA's 2010 Advocacy Day today.
December 11, 2009
Come to the Lupus Foundation of America’s 2010 Advocacy Day March 15-16!
Join with the Lupus Foundation of America (LFA), people with lupus and their friends and family for the LFA’s 2010 Advocacy Day. The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that impact people with lupus.The LFA’s 2010 Advocacy Day Program will begin on March 15th with a training session and dinner at the L'Enfant Plaza Hotel to meet other people who have been touched by lupus and discuss the LFA’s Advocacy Message.
On March 16th, we will travel to Capitol Hill to meet with Members of Congress and inform them about our legislative priorities and share our personal stories about lupus.
November 13, 2009
Save the Date: LFA's Lupus Advocacy Day on Capitol Hill to be Held March 15-16, 2010
The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers on lupus and discuss public policies that affect people with lupus.
L’Enfant Plaza Hotel, in downtown Washington DC, will be our headquarters hotel. More details will be coming soon.
L’Enfant Plaza Hotel, in downtown Washington DC, will be our headquarters hotel. More details will be coming soon.
March 18, 2009
Guest Blogger Shares Her 2009 Lupus Foundation of America Advocacy Day Experience
"While it’s not always easy to take time out of our busy lives, the Lupus Advocacy Day in March of 2009 was well worth all of the sacrifice. It was wonderful to feel the support and comfort of those who share my passion toward finding a cure for lupus. As lupus patients we often suffer in silence and try to hide our disease. Stepping out of our comfort box and speaking up for our cause was very empowering. Doing so with my fellow lupus sufferers made me realize that I am not alone in my struggle."My day’s experience included the opportunity to speak with the staff members of my district’s house member and senators. The response from them was very positive and they gave me assurance that they will speak to the issue of support from my district’s representative and senate. At the end of the day for my scheduled appointments I got on the elevator to leave the building. One other person got on the elevator with me ... a representative from a neighboring district in my state. I asked him if we could walk so that I discuss with him his support for lupus research.
"What a great experience it is to put legs to your passion!"
Katherine Hammons
Photo: Katherine Hammons, Lupus Advocate from Michigan, Lupus Foundation of America
March 16, 2009
Guest Blogger Shares His 2009 Lupus Foundation of America Advocacy Day Experience
"I feel the Lupus Foundation of America's Advocacy Day 2009 was the best ever. This was the result of many factors. The training we received prepared us for answering any questions that might be asked of us by members of Congress, or their legislative assistants."The different speakers, including Dr. Susan Manzi from the Lupus Center of Excellence in Pittsburgh, and Sandra C. Raymond, President & CEO of the Lupus Foundation of America in Washington DC, did an outstanding job of not only motivating us, but also explaining what our priorities were, and why we need additional funding.
"Each member of our group had a role to play that brought everything together. I really feel that all the training enabled us to be effective advocates. The many legislative assistants we spoke to seemed very positive and understanding. All in all, it was a tremendous experience.
"I want to thank everyone who put this fantastic program together. Last but not least, I want to thank members of the Lupus Foundation of America, Illinois Chapter. I really enjoyed working with Mary Dollear, Paul Sakol, and Sonya Loynachan."
Photo: Bruce Soehnlin, Lupus Advocate, Lupus Foundation of America, Missouri Chapter
March 12, 2009
Facebook, Twitter, Bloggers, and Advocates on Capitol Hill Create the Largest Lupus Advocacy Day in History
1300 Advocates Make Their Voices Heard
The real and virtual worlds came together on March 3, making the Eleventh Annual Advocacy Day the largest and most successful in history. We used social media and the Internet to spread the word and encourage people to get involved. E-cards were sent to our constituents with suggestions on how they could help, and we asked them to send their own e-cards to friends and family. We asked people to change their Facebook status, post information on their blogs, and use Twitter to keep everyone updated on Advocacy Day activities. A sea of advocates covered in purple also descended on Capitol Hill delivering the same message to Members of Congress -- federal funding for lupus research must be increased.
Lupus advocates drove long hours, endured bad weather, and overcame personal challenges to join us on Capitol Hill. Advocates prepared for their visits by participating in a day-long training that was kicked-off with the theme music from the movie Rocky, and the distribution of purple (the signature color for lupus) scarves. The Rocky theme music was used to inspire and motivate the advocates, while demonstrating the tenacity and fighting spirit of people with lupus. During the training advocates celebrated past successes, learned how federal funding is being used to advance lupus research, and discussed how to talk to Congressional Members and staff about our legislative agenda.
On Advocacy Day advocates wore their purple scarves. To reinforce the message of the day, they also wore stickers with the message "Eisenhower was president the last time the FDA approved a drug for lupus." Most people were surprised to learn that it has been 50 years without a new, FDA-approved lupus drug.
Senator Barbara Mikulski (D-MD) delivered a speech during the Advocacy Day luncheon that energized the advocates and brought the crowd to their feet. She reminded everyone how important advocacy is, and that we have great hope and potential for change. Senator Mikulski has always been a health care champion and patient advocate, and the LFA was pleased to present her with the Distinguished Leadership Award for her work on the Lifespan Respite Care Act, and past support of the Lupus REACH Amendments.
Advocates were successful in forming new relationships with Members of Congress and staff, and more importantly creating new champions for people with lupus on Capitol Hill. During many of the visits Members of Congress or their staff also found new connections to lupus. One advocate learned that a staff member attended high school with her daughter who has lupus. This is just one of many stories, and is a powerful reminder of how lupus touches everyone, and that it reaches beyond just the person living with the disease. We are thrilled with the results the lupus advocates achieved and thank everyone for their participation in Advocacy Day activities.
In the coming days and weeks we will be posting photos from our advocates on Flickr, and a video documenting their experience on Capitol Hill will be posted on our website and YouTube.
We have made our voices heard loud and clear on Capitol Hill -- and will continue to do so. With your ongoing support we believe we can achieve our goals and get the funding for lupus research we need that will lead to new treatments, and ultimately a cure.
The real and virtual worlds came together on March 3, making the Eleventh Annual Advocacy Day the largest and most successful in history. We used social media and the Internet to spread the word and encourage people to get involved. E-cards were sent to our constituents with suggestions on how they could help, and we asked them to send their own e-cards to friends and family. We asked people to change their Facebook status, post information on their blogs, and use Twitter to keep everyone updated on Advocacy Day activities. A sea of advocates covered in purple also descended on Capitol Hill delivering the same message to Members of Congress -- federal funding for lupus research must be increased.
Lupus advocates drove long hours, endured bad weather, and overcame personal challenges to join us on Capitol Hill. Advocates prepared for their visits by participating in a day-long training that was kicked-off with the theme music from the movie Rocky, and the distribution of purple (the signature color for lupus) scarves. The Rocky theme music was used to inspire and motivate the advocates, while demonstrating the tenacity and fighting spirit of people with lupus. During the training advocates celebrated past successes, learned how federal funding is being used to advance lupus research, and discussed how to talk to Congressional Members and staff about our legislative agenda.
On Advocacy Day advocates wore their purple scarves. To reinforce the message of the day, they also wore stickers with the message "Eisenhower was president the last time the FDA approved a drug for lupus." Most people were surprised to learn that it has been 50 years without a new, FDA-approved lupus drug.
Senator Barbara Mikulski (D-MD) delivered a speech during the Advocacy Day luncheon that energized the advocates and brought the crowd to their feet. She reminded everyone how important advocacy is, and that we have great hope and potential for change. Senator Mikulski has always been a health care champion and patient advocate, and the LFA was pleased to present her with the Distinguished Leadership Award for her work on the Lifespan Respite Care Act, and past support of the Lupus REACH Amendments.
Advocates were successful in forming new relationships with Members of Congress and staff, and more importantly creating new champions for people with lupus on Capitol Hill. During many of the visits Members of Congress or their staff also found new connections to lupus. One advocate learned that a staff member attended high school with her daughter who has lupus. This is just one of many stories, and is a powerful reminder of how lupus touches everyone, and that it reaches beyond just the person living with the disease. We are thrilled with the results the lupus advocates achieved and thank everyone for their participation in Advocacy Day activities.
In the coming days and weeks we will be posting photos from our advocates on Flickr, and a video documenting their experience on Capitol Hill will be posted on our website and YouTube.
We have made our voices heard loud and clear on Capitol Hill -- and will continue to do so. With your ongoing support we believe we can achieve our goals and get the funding for lupus research we need that will lead to new treatments, and ultimately a cure.
March 02, 2009
“Call-In to Congress” on Tuesday, March 3, and Make Your Voice Heard – More Money is Needed for Lupus Research.
Fifty years is too long to wait for safer, more tolerable and effective FDA-approved lupus treatments. Help the estimated 1.5 million Americans living with lupus by being a part of the "Call-In to Congress" component of the Lupus Foundation of America’s 11th Annual Advocacy Day on March 3, 2009.
Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and click on the link called "Call your Members of Congress Tuesday, March 3rd!" Then, you’ll enter your zip code and get the phone numbers for your elected officials.
The other thing you will notice after you’ve entered your zip code, is that you will also see a guide of Talking Points for when you speak with Congressional Staff. Use these talking points to tell them how having lupus or knowing someone with lupus has affected your life.
The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.
Together, we can change the future of those affected by lupus.
Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and click on the link called "Call your Members of Congress Tuesday, March 3rd!" Then, you’ll enter your zip code and get the phone numbers for your elected officials.
The other thing you will notice after you’ve entered your zip code, is that you will also see a guide of Talking Points for when you speak with Congressional Staff. Use these talking points to tell them how having lupus or knowing someone with lupus has affected your life.
The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.
Together, we can change the future of those affected by lupus.
March 01, 2009
Here's One Way You Can Raise Awareness about Lupus; Send an eCard
Hi everyone:
And welcome to the special Sunday night, pre-Advocacy Day on Capitol Hill edition of "On the Road to a Cure."
As you no doubt have heard, this coming Tuesday, March 3, 2009, is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus. I'd like to highlight one way.
Send an eCard
Raise awareness about lupus and the need for new treatments by sending your friends and family an eCard. There are 3 cards to choose from: Eisenhower, nostalgic cars, and traffic jam. You can see an example of the Eisenhower eCard in this column.
Fifty years is entirely too long to wait for better, safer, and more tolerable treatments.
Help the Lupus Foundation of America raise awareness about the seriousness of lupus. Send an eCard to your family, friends, and coworkers today.
I'll be back again tomorrow night, to share with you how to contact your senators and representative on Tuesday, March 3. It's simple to do, and you can do it from the comfort of your home.
Until tomorrow night,
Wick
And welcome to the special Sunday night, pre-Advocacy Day on Capitol Hill edition of "On the Road to a Cure."
As you no doubt have heard, this coming Tuesday, March 3, 2009, is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus. I'd like to highlight one way.Send an eCard
Raise awareness about lupus and the need for new treatments by sending your friends and family an eCard. There are 3 cards to choose from: Eisenhower, nostalgic cars, and traffic jam. You can see an example of the Eisenhower eCard in this column.
Fifty years is entirely too long to wait for better, safer, and more tolerable treatments.
Help the Lupus Foundation of America raise awareness about the seriousness of lupus. Send an eCard to your family, friends, and coworkers today.
I'll be back again tomorrow night, to share with you how to contact your senators and representative on Tuesday, March 3. It's simple to do, and you can do it from the comfort of your home.
Until tomorrow night,
Wick
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