View Full Version : An American Dream. January 20, 2009

01-21-2009, 09:36 AM
What an American family dream has unfolded. And a family to help us reach the dream of America…a country filled with peace, hopes, dreams to come true, equality and justice for everyone.

The joy, the hope, the happy was contagious...I hope everyone, in every home in America felt a bit of it yesterday. Feelings like those, optimism for our future, creates change, movement, onward and forward socially and economically.

I believe this day has changed everyone, like turn of a kaleidoscope....our perception, our reception of one another. Big or small I believe we all felt a change within us.

To dreams coming true and instilling hope...cheers.

01-21-2009, 09:38 AM

we felt the words over here in england too, his speach was amazing
i hope it brings some sort of change over here too


01-21-2009, 12:35 PM
Thanks for sharing your wonderful words of inspiration, Oluwa. A slow smile spread across my lips as I read. :D

Yes, yesterday made my day! President Obama's words were hopeful, inspiring, and brought a surge of hope and peace to my heart. :D I had a light touch to my step and wings in my heart all day.

I pray it brought hope to the many American's who are struggling financially, emotionally and otherwise. Hopefully, it will help us start to turn the corner, look ahead, and bring some good for all.

I truly hope we can come together as a Country and all work together for our common good for a change. As well as the common good of the planet and all it's inhabitants.

I'm willing to bet, Saysusie was in one of the most joyful, inspiring, love-filled places on Earth yesterday. I can't wait till she shares her experience!

I'm going to borrow Saysusie's tagline for this one................

Peace and Blessings,

Lori :P

01-21-2009, 01:10 PM
My father used to work in Washington D.C., and his position afforded me many opportunities to attend some large events there, including the inauguration of a past President. I've seen some huge crowds in D.C. before, but I have never seen anything like what I saw there on TV yesterday. From the Capitol steps, to the Washington Monument, and from the Smithsonian Air and Space across the mall to the Smithsonian American History building, it looked as though every single square foot of ground contained a person. And to see all those people united and there for one common reason and hope, was an amazing sight to behold. There have been so many "where were you" historic moments over the years that have involved horror, like the carnage in New York City and Washington D.C. on 9-11-01 and the loss of 2 Space Shuttles and their crews. It was such a change, to witness a where were you historic event that involved so much inspiration, hope, and the happiness of so many people. What an American family dream indeed. Many naysayers would call the words of hope uttered by politicians and leaders to be just empty rhetoric. In many cases, they may be right, but yesterday, the hope I saw in the faces and felt in the hearts of millions of my fellow Americans was, and is, very real. What a day.

01-21-2009, 08:47 PM
I think SaySuzie was singing in a choir at the inauguration. Anyone here from her yet on that?

01-22-2009, 12:30 AM
Hello Conrad,

I spoke to Saysusie while she was on her way there. She sang with a choir at a pre-inaugural event on the 19th. She mentioned that she would have a chance to meet (soon to be) President and Mrs. Obama. I sent her an e-mail yesterday to see how she's doing but have not heard back from her yet. I can't wait to hear how it went. I believe she'll be back this weekend.


Angel Oliver
01-22-2009, 04:32 AM
Wow what a day it was. I too am in the UK and watched it on the telly.Wow what a feeling to see history being made.I am so glad for him. Such exciting times ahead i hope for you all in the U.S.
I bet Saysusie had a fab time and something she'll remember forever!


01-23-2009, 07:30 AM
Does anyone know if the new administration will advocate the Lupus agenda--more money, research, etc. to find a cure for Lupu?--That is what I hope for.

01-23-2009, 07:40 AM
Does anyone know if the new administration will advocate the Lupus agenda--more money, research, etc. to find a cure for Lupu?--That is what I hope for.

I am hoping that our new First Lady will become an advocate for people with Lupus. Since many of the people with Lupus are African American Women, I wonder if Mrs. Obama knows anyone with the disease. If she does, that could be the first step in getting an advocate in the White House. I'm thinking Saysusie may have some info or ideas on this subject.

01-23-2009, 07:59 AM
I was thinking about this same thing yesterday.

I'm not just hoping for it........I'm planning on writing her a letter and asking for it. I think we should all write her a letter and share our stories. We should let her know how devastating this disease is, how many peoples lives it has changed, and ask for her support/advocacy.

Lori :)

01-24-2009, 07:59 AM
The First Lady Michelle, just may be an advocate for Lupus..autoimmune diseases. At www.whitehouse.gov it reads....

But before she was a mother — or a wife, lawyer, or public servant — she was Fraser and Marian Robinson's daughter.

The Robinsons lived in a brick bungalow on the South Side of Chicago. Fraser was a pump operator for the Chicago Water Department, and despite being diagnosed with multiple sclerosis at a young age, he hardly ever missed a day of work.


01-24-2009, 08:02 AM

Advocacy Day
Save the Date: Advocacy Day 2009 is March 2-3.

Advocacy Day 2008 was....On Tuesday, March 11, 2008 more than 300 individuals with lupus, their families, and health professionals urged Members of Congress to increase government funding for lupus medical research and enact legislation that will greatly expand federal efforts on lupus. The advocates, representing 37 states, participated in the Tenth Annual Lupus Foundation of America (LFA) Advocacy Day.

Advocates urged lawmaker to increase funding for biomedical research supported by the National Institutes of Health and epidemiological research sponsored by the Centers for Disease Control and Prevention. They also urged Members of Congress to enact the Lupus REACH (Research, Education, Awareness, Communications and Healthcare) Amendments Act (H.R. 1192 and S. 1359).

United States Senators Patty Murray (D-WA) and Robert Bennett (R-UT), who introduced the Lupus REACH Amendments Act in the Senate, received the Distinguished Lupus Leadership Award for sponsoring the legislation which will further federal efforts to combat lupus, address gaps in research, and heighten awareness of lupus symptoms and health effects among the public and health professionals.

Advocates met with approximately 200 Senators, Representatives and congressional staff members to educate policy makers on lupus and its impact on individuals and families. The advocates were supported by thousands of lupus e-Advocates across the nation who also participated in LFA Advocacy Day by sending email messages or placing phone calls to the offices of their United States Senators and U.S. Representative.

In past years, LFA lupus advocates have been effective in advancing lupus research and education programs conducted by the federal government, including:

coordinating efforts among the various federal agencies with an interest in lupus;
securing millions of dollars for the first-ever comprehensive national epidemiological study on lupus;
opening new sources of federal funding for biomedical research on lupus;
obtaining changes in draft Social Security Disability regulations which will enable more people disabled by lupus to receive benefits;
securing changes to regulations governing the Medicare Part D Prescription Drug Benefit to pay for prescription drugs required to treat lupus;
partnering with various agencies of the U.S. Department of Health and Human Services to increase public recognition of the serious consequences of lupus.

For more info, follow the links....




01-24-2009, 11:28 AM
Thank you, Oluwa, for this awesome information! :D

You continue to amaze me with the Lupus knowledge that you share with all of us, as well as your unending support and love.

You are a blessing! And a good friend to this forum and it's members.

Enjoy your weekend..............


Lori :P

01-29-2009, 12:48 PM
Hi Lori...

Back at you...too kind. Thank you.

Thank you very much but I owe a lot to Saysusie...who has been my excellent source and a momentum in me to want to seek out more and more info. I dig.

She is the one who brought it to light, to the forum months back about the First Lady's Dad who had MS to us...I learn from Saysusie. Thank you, Saysusie...

Hope your week has been wonderful, Lori...

Be well...hugs.

01-30-2009, 05:49 PM
Come to Washington, DC for
the Lupus Foundation of America’s 2009 Advocacy Day
March 2-3, 2009

Deadline for LFA Advocacy Day Hotel Registration is Friday, February 6!

It was 50 years ago that the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus. The Lupus Foundation of America (LFA) invites you, your friends, and family members to join with us and lupus advocates from across the country in Washington, DC for the 11th annual Advocacy Day. Together we can change the coming years by advocating for funding that will lead to safer, more tolerable, and effective lupus treatments.

Registration Fee: $35
(includes advocacy materials, select meals, and an event recognition gift)

Register for LFA's Advocacy Day Here:
LFA's 2009 Advocacy Day on Capitol Hill

Event Schedule:
Monday, March 2 -- Meet & Greet and Advocacy Training

11:00 a.m.-1:00 p.m. - For early arrivers, an informal "Meet and Greet" lunch will be held.
1:30-5:00 p.m. - The advocacy training session will review meeting strategies and the LFA’s advocacy priorities.
6:30-8:00 p.m. - Dinner with featured speaker, Susan Manzi, M.D., MPH, LFA Board & Medical-Scientific Advisory Council Member, and Associate Professor of Medicine at the University of Pittsburgh.
Tuesday, March 3 -- On Capitol Hill

9:00 a.m.-4:00 p.m. - Join the LFA and its chapter representatives, physicians, researchers, and other lupus advocates on Capitol Hill to meet with Members of Congress and their staff to inform them about lupus and how they can help advance lupus awareness, research, education, and drug development.
Washington Plaza Hotel
10 Thomas Circle, NW
Washington, DC

Make Your Hotel Reservation By Friday, February 6:
A block of rooms has been secured by the LFA for $239 (plus taxes) per night. To make a reservation, go to Hotel Reservations for LFA's 2009 Advocacy Day on Capitol Hill, and enter the code "lupus" to secure one of the newly renovated rooms.

If you have any questions, contact Sara Chang at chang@lupus.org or by phone at 202-349-1169.

For more information about LFA legislative successes, please visit: www.lupus.org/advocacy. You can also learn more about the work of Dr. Joe Ahearn who is receiving a Department of Defense grant thanks in part to our advocacy efforts!

sick n tired
02-02-2009, 08:25 PM

Do you have to be a Dr or med person to go to this meeting? I was thinking about maybe starting a chapter in my area as there does not seem to be one in this county...if there is I haven't heard about it. Of course, I will have to get out of bed to do that...

02-23-2009, 04:40 PM
Yesterday, President Obama signed into law the American Recovery and Reinvestment Act of 2009. With the leadership of Senator Arlen Specter and Senator Tom Harkin, Congress secured a significant funding increase of $10.4 billion for the National Institutes of Health (NIH). Among other provisions this bill will provide much-needed funding to support research leading to scientific and medical breakthroughs, and ultimately new treatments. This is a victory for the medical and scientific community who are working tirelessly to develop new treatments for people with lupus and other diseases.
Government funding for lupus research is more important than ever before. November 20, 2008, marked 50 years since the Food and Drug Administration (FDA) last approved a new drug specifically to treat lupus. Compared to other diseases, lupus is unique, both in its lack of FDA-approved treatments, and in the dearth of research endeavors to identify better treatments, and, ultimately, a cure.
On March 2-3 an estimated 300 individuals with lupus, their families, and health professionals will deliver this message to Members of the United States Congress, and serve as the voices of the estimated 1.5 million people who have lupus, when the Lupus Foundation of America (LFA) conducts its Eleventh Annual Advocacy Day in Washington, D.C. LFA advocates have achieved numerous successes in recent years, including a call for a national public awareness campaign, funding for studies that determine the true prevalence of lupus in the U.S. and opening new sources of federal agency funding for biomedical research.
The past success of our advocates and the new legislation demonstrate the critical importance of advocacy efforts and why people with lupus must be heard by their elected officials and encouraged to support policy that expands research funding, increases access, and improves the quality of care. We hope that you will join us and that we can continue to count on your support in the fight against lupus.
On behalf of all people affected by lupus, the Lupus Foundation of America thanks President Obama and Congress for supporting NIH research and helping us move closer to finding better treatments and a cure for this disabling and life-threatening disease.

Sandra C. Raymond
President and CEO

02-24-2009, 10:44 AM
I so wish that I could be in Washington on March 2-3. I did participate in the e-advocacy by submitting an e-mail. I have, however, marked those days on my calendar. Thank You So Much for providing this great information. You and I were right, President Obama has not forgotten us and I am sure that the fact that his father-in-law suffered from an auto-immune disease was an important factor.
This is the time for change and the time for hope!

Peace and Blessings

02-27-2009, 08:36 PM
Fifty years is too long to wait for safer, more tolerable and effective FDA-approved lupus treatments. You can help the estimated 1.5 million Americans living with lupus by being a part of the Lupus Foundation of America’s Eleventh Annual Advocacy Day on March 3, 2009 in Washington, D.C.! Together, we can change the future of those affected by lupus.

Here are a few ways you can help.

Call your Representative and Senators and tell them to provide more funding for lupus research.

To find your Representative and Senators, visit our LFA Legislative Action Center (http://donate.lupus.org/site/R?i=QleXzhrP19gZp3zMFf_GQA..).

Not sure what to say?
Review our Congressional Messages (http://donate.lupus.org/site/R?i=H277CP0sXLjlb_OCA1lBig..). (PDF)

Send an e-card (http://donate.lupus.org/site/R?i=wdQiW-bMqNF9jxBXXKzlZg..). Raise awareness about lupus and the need for new FDA-approved treatments by sending your friends and family an e-card.

Donate (http://donate.lupus.org/site/R?i=LSq3GwQ7cbSIrda44qr9Aw..). With your donation we can continue to fund cutting-edge lupus research and advocate on behalf of people like Debbie, and eventually find a cure for lupus.

02-28-2009, 08:10 AM
I receive these message from the Lupus Foundation, too. It gives us hope! My little local support group is working with the Minnesota branch of the Lupus Foundation to get the word out; to help people understand autoimmune diseases and how many are affected. Thanks, Oluwa for reminding us that we need to have a voice.