by Mary Crimmings, VP of Marketing & Communications
I’m able to get home to Michigan to see my family 2 times per year, usually around the holidays. When we connect in person it is time to relax, have fun and catch up on each other’s lives. During each visit my family learns a bit more about lupus as they ask me about my job and what I’m working on. But during my visit home earlier this month, the lupus stories and facts they’ve heard from me came alive when my family visited the purple lupus awareness bus. While on the bus it was the videos of personal stories from people living with lupus that touched their hearts and provided a true emotional connection to the disease. Their visit demonstrated that even those who have some awareness of lupus can gain better understand of this disease.
As you might have guessed, the reason for my visit home was not to see my family (although that was a bonus, especially meeting my new niece), I was in the Motor City for the Detroit stop on the Lupus Foundation of America’s Help Us Solve the Cruel Mystery™ National Tour. I was so pleased that Detroit was selected to be one of the cities selected for the first phase of this tour. And then after spending three days talking to metro Detroiters at the bus and the education program, I was filled with enormous pride for my organization and the teams who have worked so hard to make this program a reality.
Everyone I talked to mentioned how much they learned (including my dear friends who came out in the rain and snow to visit the bus). However, I continued to be struck by the many people we met at the bus who have a personal connection to lupus but, as our research revealed, really don’t know much about lupus beyond the name. And I was heart-broken to hear too many stories from people who lost a loved one to this cruel disease.
The weekend was affirmation of our work and that we must continue to connect to people with lupus and provide them with the latest information on the disease, and we must continue our efforts to gain better public understand of lupus. It is with greater awareness and public support of this disease that we will be able to secure more funding for lupus research.
My trip home to Detroit has given me renewed energy to continue the fight on behalf of the millions of people affected by lupus. And I’m excited about the many activities and opportunities we ALL have in the coming months through Lupus Awareness Month and the National Lupus Advocacy Summit to secure greater awareness and understanding of lupus – the cruel mystery.
Those who have a connection to lupus hold the power to make the greatest impact for others to understand this disease through personal stories of how lupus has affected their life! So as we look though our closets to wear purple (the color for lupus awareness) during Lupus Awareness Month, let’s not forget to also start the conversation about lupus. Asking someone a simple question such as, Have you ever heard of lupus? or Do you know someone with lupus?, opens the door to share a fact or story about the disease, invite someone to sign the petition to Congress asking for more lupus research, and engage others to join the fight against this cruel and mysterious disease.
I’m working on my own personal lupus awareness month outreach plan – how about you?
Showing posts with label Cruel Mystery Tour. Show all posts
Showing posts with label Cruel Mystery Tour. Show all posts
April 23, 2013
April 10, 2013
Guest Blog: For You, Mom
by Jan Angilella
My mother was diagnosed with lupus in the 1960s. But it went dormant for many years, with no outward symptoms. It wasn’t until the late 1980s that she started having more serious health issues and then it snowballed. I remember telling friends about the disease and was often met with the question, “What’s lupus?”
When I saw the presentations inside the Help Us Solve the Cruel Mystery™ tour bus last week, I knew that so much progress has already been made just in awareness alone. This is an insidious, mysterious disease that needs more attention and more research to find a cure. That’s why I signed the petition to Congress asking for their support in funding research for a cure as well as safe, tolerable treatments.
I went through it with my Mom. She lived with the swollen joints, the dry eye and then the failed kidneys. I gave her one of mine in 2003 and her life changed after that. But lupus effects stick around. She still had bone issues, her feet were still swollen, she had to watch her diet – too much protein, not enough protein – and there was always fatigue.
I lost my mom in 2011 but her spirit lives on in me. There is a hole in my heart that will never heal, yet I am empowered by her life, her strength. And so I will help solve the cruel mystery that is lupus in any way I can. The bus tour is well done and answers a lot of questions about the disease. Let’s find a cure.
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| Jan from Cincinnati |
When I saw the presentations inside the Help Us Solve the Cruel Mystery™ tour bus last week, I knew that so much progress has already been made just in awareness alone. This is an insidious, mysterious disease that needs more attention and more research to find a cure. That’s why I signed the petition to Congress asking for their support in funding research for a cure as well as safe, tolerable treatments.
I went through it with my Mom. She lived with the swollen joints, the dry eye and then the failed kidneys. I gave her one of mine in 2003 and her life changed after that. But lupus effects stick around. She still had bone issues, her feet were still swollen, she had to watch her diet – too much protein, not enough protein – and there was always fatigue.
I lost my mom in 2011 but her spirit lives on in me. There is a hole in my heart that will never heal, yet I am empowered by her life, her strength. And so I will help solve the cruel mystery that is lupus in any way I can. The bus tour is well done and answers a lot of questions about the disease. Let’s find a cure.
March 13, 2013
Guest Blog: Sunny With a High Chance of Happy Tears
I can so clearly remember the excitement one Friday afternoon when the elderly community that my mother-in-law lived in finally got added to the city bus line. There were balloons, food, music and the press was there to cover the excitement. The battle was not an easy one. The fight had been going on for years, and it was met with the proper amount of tears when the elderly residents loaded onto the little bus, with city representatives, and were taken on the commemorative route.
These same feelings are stirring in me this week as the Help Us Solve the Cruel Mystery Tour bus is making its way into town. It is not coming to give me a ride and increase my independence, it is more than that. I have been living with lupus for over 26 years and the journey has been a roller coaster of emotions. When I was first diagnosed it was frustration. How could I be so sick and no one know what was happening? This moved quickly into fear when I got the diagnosis of lupus, and started reading what I was actually dealing with; and accelerated into horror when I was spending more time in the hospital than at home with my family. The amount of medicine I had to take to keep me “well” was baffling. I was taking these drugs to help calm the lupus and its piggyback diseases. All of a sudden I was getting major side effects from the drugs that were supposed to help me. This is when confusion set in. What is this cruel disease that has taken over not only my life but that of my family?
I reached out to the lupus community, became a support group leader online, and joined the Lupus Foundation of America, DC/MD/VA Chapter. I had to do something to help people in my same situation; especially those going through those first terrible years. I work health fairs hoping to catch the person with all the symptoms that just doesn’t have the doctor that has yet put them together. I raise money for the Walk to End Lupus Now so that we can support research for this disease that we so desperately need. I advocate for funding for lupus from our government both here in Virginia and in D.C., and I spend hours on the computer with people in need each week.
This week I am eager, eager for this big purple bus to arrive, this bus that holds within it all the mystery of lupus that I find so hard to make people understand. I want people to visit and learn what living with lupus is like. I want the general public to know my disease. It is important to me, I so want it to be important to them. I want patients with lupus to come to the bus and see that this bus is for us, that we deserve to be heard. I want everyone to come sign the petition for Congress to set aside funding for research for lupus. My emotional forecast for March 14-16th when the bus is in town: sunny with a high chance of happy tears!
Michelle Shuman is an active volunteer with the Lupus Foundation of America, DC/Maryland/Virginia Chapter. She resides in Richmond, VA.
February 25, 2013
Solving the Cruel Mystery, One City at a Time: Dallas
By Tessie Holloway, Lupus Foundation of America, North Texas Chapter, President & CEO
We began the tour at Hulen Mall in Fort Worth, made two stops in Arlington, continued to South Dallas, North Dallas, and ended near downtown Dallas, site of two education programs that were held for local physicians and lupus patients. People came to visit the “purple bus” from many corners of North Texas and as far as El Paso, such is the case of Debbie Hipolito and her family who drove more than 10 hours to meet others with lupus and to learn about our awareness and education campaign.
I met some amazing people who live with this chronic disease and can relate to each one of the messages displayed in the interactive bus. Those who did not know but the word “lupus” gained a deeper understanding of the seriousness and how those affected by the disease live isolated from the things many of us take for granted each day. Many more, were so glad to know the message was being delivered to the general public by our mobile billboard, the “purple bus”!, while radio and TV interviews attracted new interest from our community in support of those who suffer from lupus.
The general public was invited to demonstrate their support for people with lupus by signing a petition that asks Congress to provide more funding for lupus research and education services. It is wonderful to be part of the only national force devoted to solving the mystery of lupus, while providing caring support for those who suffer from the disease!
Just two weeks ago the Help Us Solve the Cruel Mystery™ National Tour rolled into the Dallas and Fort Worth Metroplex area. The theme “Help Us Solve the Cruel Mystery” helped increase public awareness of lupus and shed light on the brutal impact of lupus. Our Chapter had the opportunity to connect with new individuals seeking answers and support and talk with so many people who have been touched by the disease.
We began the tour at Hulen Mall in Fort Worth, made two stops in Arlington, continued to South Dallas, North Dallas, and ended near downtown Dallas, site of two education programs that were held for local physicians and lupus patients. People came to visit the “purple bus” from many corners of North Texas and as far as El Paso, such is the case of Debbie Hipolito and her family who drove more than 10 hours to meet others with lupus and to learn about our awareness and education campaign.
I met some amazing people who live with this chronic disease and can relate to each one of the messages displayed in the interactive bus. Those who did not know but the word “lupus” gained a deeper understanding of the seriousness and how those affected by the disease live isolated from the things many of us take for granted each day. Many more, were so glad to know the message was being delivered to the general public by our mobile billboard, the “purple bus”!, while radio and TV interviews attracted new interest from our community in support of those who suffer from lupus.
The general public was invited to demonstrate their support for people with lupus by signing a petition that asks Congress to provide more funding for lupus research and education services. It is wonderful to be part of the only national force devoted to solving the mystery of lupus, while providing caring support for those who suffer from the disease!
February 04, 2013
Solving the Cruel Mystery, One City at a Time
By Meghan Cunningham and Alisha Ladenburg
Pfew! January has been quite the busy month here at the Lupus Foundation of America. Our Help Us Solve the Cruel Mystery Tour™ traveled to Los Angeles and Denver last month to solve the cruel mystery of lupus and end its devastating impact through our educational programs and 45-foot-long purple bus.
We stopped at several locations around both cities with our bus and attracted the attention of many residents, including several celebrities. While in Los Angeles, model Mercedes Yvette (America’s Next Top Model), actor Ian Harding (Pretty Little Liar), and Tichina Arnold (Happily Divorced) came out to join the fight against lupus. All three know the importance of raising awareness and bringing attention to the cause; Ian and Tichina both have loved ones living with lupus while Mercedes was diagnosed with the disease at the age of 21. We are so thrilled to have their continued support.Thanks Mercedes, Ian, and Tichina!
We met so many people on the bus, from those who have been living with lupus for years and those who had never heard of lupus before. However, everyone was excited to view our interactive exhibits and to learn what it was like to live with lupus. A health educator at a local university told us that because of the exhibits on the bus, she realized the devastating impact of the disease and that she will incorporate lupus into her curriculum in the future. Another woman brought her husband to the bus in Denver on her lunch break. “This is such a great experience,” she later wrote on our Facebook page, “[especially] for those like my husband who doesn’t have lupus so that he can better understand what I go through every day.”
A big part of this tour is Lupus: Learning and Living, an educational program for people with lupus and their families and friends. Leading doctors and speakers from around the country present on topics related to living and coping with lupus. After the presentation, we open up the stage for the audience to get the chance to ask some very candid questions and receive expert advice. It really showed how unique this disease was for everyone yet also showed that they were not alone in the fight against lupus.
The education program has been a great success so far and to say we had a big turnout would be an understatement; the rooms were always packed with people eager to learn about lupus. We had the opportunity to learn more about the attendees and hear their stories as they checked in. While many people mentioned they were living with lupus, it was really moving to learn just how many people came in just wanting to learn more and lend their voice to the cause.
Thank you to everyone who came out to see us while we were in LA and Denver. We left both cities on such a high note and can’t wait to bring the full program to Dallas this weekend! For upcoming dates and locations, please visit us at cruelmystery.org.
Meghan Cunningham, MPH, is the Education and Research Coordinator and Alisha Ladenburg is the Marketing and Communications Assistant with the Lupus Foundation of America, Inc.
Pfew! January has been quite the busy month here at the Lupus Foundation of America. Our Help Us Solve the Cruel Mystery Tour™ traveled to Los Angeles and Denver last month to solve the cruel mystery of lupus and end its devastating impact through our educational programs and 45-foot-long purple bus.
 |  |
| Visitors waiting lining up to tour the bus in Los Angeles | The bus in front of Pepsi Center for a Denver Nuggets home game |
We stopped at several locations around both cities with our bus and attracted the attention of many residents, including several celebrities. While in Los Angeles, model Mercedes Yvette (America’s Next Top Model), actor Ian Harding (Pretty Little Liar), and Tichina Arnold (Happily Divorced) came out to join the fight against lupus. All three know the importance of raising awareness and bringing attention to the cause; Ian and Tichina both have loved ones living with lupus while Mercedes was diagnosed with the disease at the age of 21. We are so thrilled to have their continued support.Thanks Mercedes, Ian, and Tichina!
 |
| (L-R) Tichina Arnold with her daughter Alijah, Ian Harding, and Mercedes Yvette |
We met so many people on the bus, from those who have been living with lupus for years and those who had never heard of lupus before. However, everyone was excited to view our interactive exhibits and to learn what it was like to live with lupus. A health educator at a local university told us that because of the exhibits on the bus, she realized the devastating impact of the disease and that she will incorporate lupus into her curriculum in the future. Another woman brought her husband to the bus in Denver on her lunch break. “This is such a great experience,” she later wrote on our Facebook page, “[especially] for those like my husband who doesn’t have lupus so that he can better understand what I go through every day.”
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| A packed room in Denver for Lupus: Learning and Living |
The education program has been a great success so far and to say we had a big turnout would be an understatement; the rooms were always packed with people eager to learn about lupus. We had the opportunity to learn more about the attendees and hear their stories as they checked in. While many people mentioned they were living with lupus, it was really moving to learn just how many people came in just wanting to learn more and lend their voice to the cause.
Thank you to everyone who came out to see us while we were in LA and Denver. We left both cities on such a high note and can’t wait to bring the full program to Dallas this weekend! For upcoming dates and locations, please visit us at cruelmystery.org.
Meghan Cunningham, MPH, is the Education and Research Coordinator and Alisha Ladenburg is the Marketing and Communications Assistant with the Lupus Foundation of America, Inc.
November 28, 2012
Lupus Education Program Coming to a City Near You!
San Francisco, CA
December 1, 2012
University of California, San Francisco Millberry Union Event and Meeting Center
Los Angeles, CA
January 12, 2013
JW Marriott
Denver, CO
January 26, 2013
Denver Marriott City Center
Dallas, TX
February 9, 2013
Dallas Marriott Suites Medical/Market Center
Raleigh, NC
March 2, 2013
Raleigh Marriott City Center
Richmond, VA
March 16, 2013
Virginia Commonwealth University
Cincinnati, OH
April 6, 2013
Kingsgate Marriott Conference Center at the University of Cincinnati
Detroit, MI
April 13, 2013
Westin Book Cadillac Detroit
Boston, MA
April 27, 2013
TBD
New York City, NY
May 18, 2013
TBD
Can’t make the education event? Visit cruelmystery.org to find out more about the Help Us Solve the Cruel Mystery™ National Tour, and how you can help raise awareness, rally support, and promote a greater understanding of lupus.
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