PLEASE sign up for the MCRI 12 Day Challenge! YES, I am BEGGING. Let's cure myeloma now!!!

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BY JENNY A ON OCTOBER 20, 2015MYELOMA CROWD RESEARCH INITIATIVE, MYELOMA NEWS

We have been given a unique opportunity to get together as patients, family, friends and caregivers to raise research dollars and awareness for multiple myeloma through our social media actions.

The 12-Day MCRI Challenge will help each of us take specific actions that will directly impact our own outcome or the outcome of someone we love with multiple myeloma. Through a united team effort, theMCRI 12-Day Challenge will allows us to provide awareness, education, and important research dollars to accelerate a cure.

As the second phase of our Myeloma Crowd Research Initiative fundraising campaign, we’re announcing our inaugural “Can’t Wait for a Cure MCRI 12-Day Challenge,” a campaign that lets YOU take action to help myeloma patients. Takeda Oncology and Signal Genetics have agreed to pay $1 for every social media impression that is associated with one of our challenges. Our goal is to reach over 50,000 impressions in 12 days. We have a short window to take advantage of this opportunity and 100% of this money goes to sponsor the two MCRI myeloma research projects.

Here’s How it Works

1. Register

Starting today, you can register to join the Myeloma Crowd MCRI 12-Day Challenge. We are scheduled to start the challenges on Monday, October 26th. We’ll keep you up-to-date on the daily challenge, track your social media shares and tell you who won the prize of the day. Our goal is to have thousands of people taking action – patients, caregivers, siblings, grandkids, long-lost friends and anyone who knows and loves a myeloma patient!

Register

2. Do the Daily Challenge for 12 Days

Beginning on Monday, October 26th, we will post/email a daily challenge for 12 consecutive days. The challenges are simple: read an article and share it on social media, perform a simple act of service, or learn about a key topic that could change the course of a patient’s care. Do the challenge.

3. Share the Challenge on Social Media

After you’ve finished your daily challenge, please share the challenge link on your social media with the hashtags #discovermyeloma, #mmgenetics and #curemyeloma. Our goal is to get over 50,000 impressions by the end of the 12 days. Don’t worry – once you register we’ll send you a daily email with simple examples you can copy and paste into your social media to share once you’ve completed the challenge.

4. Help Earn Funds for Myeloma Research Through Your Actions

For each action you take, our generous sponsors, Takeda Oncology and Signal Genetics will donate $1 to the Myeloma Crowd Research Initiative. Your small and simple actions will not only educate, but will also bring tens of thousands of dollars to myeloma research!

Our host sponsor Takeda Oncology is donating tens of thousands of dollars to make these challenges meaningful for patients and research. They provide amazing support of myeloma awareness and are a world class supporter of patients and patient advocacy!

Signal Genetics is a participating sponsor and in addition to their donation amount has has granted a FREE MyPRS test ($2900 value) as one of the prizes. Fantastic!

Thanks also to iHeart Media/94.1 KODJ and Dr. Guido Tricot and Dr. Robert Orlowski for their generous donations of tickets and time for our prize locker.

5. Earn Prizes

For each challenge, we will randomly select one winner from the participants of that day’s challenge. You must be registered either through the registration button above or the Time Machine phone app to be included in the raffle for this daily prize. The winner will be announced on the day following the challenge. Additional prizes are also available with the use of the app described below.

If You’re Tech-Savvy

If you, your kids or grandkids are tech-savvy, you can download an app called Time Machine on your smartphone to help you track your activity. Don’t do any of the challenges just yet! We are going to start them together on October 26th maximum impact. Here’s how to use the app:

1. Download the Time Machine App on your phone
   GET TIME MACHINE ON IOSGET TIME MACHINE ON GOOGLE PLAY
2. Find our campaign called “Can’t Wait for a Cure, Myeloma Crowd”
3. Login with Facebook or Twitter. This is how you will share the actions on social media
4. Click on “Do This”
5. When we post the challenge, do it in the app. The app will walk you through the steps to share your action on social media.

Register Today

Join Us and Take Action Today

Please join our united voice to power up our impact and improve outcomes for myeloma patients everywhere. Please share this article with your friends and family and invite them to register and do something meaningful for patients and their families.

For questions about the Time Machine app or the campaign, email us at info@crowdcare.org

Who can wait for a myeloma cure? Not me!

I am so honored and excited to be featured in Myeloma Crowd's video where we answer "Who can wait for a cure? Not me!" It is right here. http://www.myelomacrowd.org/cant-wait-for-a-cure/

The MCRI Is Speeding The Case Of Research

The Myeloma Crowd Research Initiative is now underway. This is the first time that patients have joined together to help find and fund potentially curative research for themselves. Bold? Yes. Needed? Absolutely.

With 1 out of 12 proposed projects actually funded by the National Cancer Institute, bad researchers have long since left the field. Dr. Craig Crews, inventor of carfilzomib, describes it as “cutting into bone” for talented researchers trying to make new discoveries. Young researchers are wary to join a field where they can’t drive to better outcomes for patients, simply because there is no funding.

I can’t sit and wait, can you? To wait for the “standard” process we’ve used for the last 50 years, we will wait patiently for an on-average 10-year cycle to find a new drug. Today, we are thrilled that newer drugs are coming into the clinic for multiple myeloma and are extending life, but none so far are considered to be “curative”. Frankly, I don’t have the time to wait. With a disease that has on average a 4-6 life expectancy, most of us will be gone in that 10 year period if we do nothing.

We have an opportunity before us. With the help of top notch myeloma experts, we have now found two thrilling projects that need our attention and funding. We set out to find solutions for high-risk multiple myeloma. What we found was cutting-edge research that will be effective for high-risk patients but also for low and standard risk patients. These two projects are immunotherapies, or ways to wake up the immune system to fight myeloma. To learn more about these projects, click here.

Patients can’t control everything about their disease, but they can determine how quickly a cure is discovered. While all may not be able to donate to research, we all have family and friends around us who want to see us thrive. Today, you can create your own fundraising page and invite the people who love you to support you by donating to that page. This is a meaningful way they can help  extend your life.

All of the proceeds raised will be donated to these two projects and donors will know exactly how their donation is being applied.

We have donation thank you gifts and prizes for top personal fundraising pages, but our best reward will be to see game-changing research come to the clinic for each of us.

Please join us today to be an agent of change for your own disease.

PLEASE donate! 

Please consider donating to my Myeloma page. Simply click here. Your donation is fully tax deductible. 

Details on MCRI

The Myeloma Crowd Research Initiative has selected two potentially CURATIVE myeloma clinical trials to fund. These trials are happening NOW and are track-able. That means you can watch, participate, and track their progress. Your donation will NOT go into a Big Black Hole of "general donation" never to be heard and scene of again. I am raising funds to help move these exciting projects forward. The very lives of multiple myeloma patients DEPEND ON IT.

We can CURE this blood cancer but I need YOUR help to do this. If you are so inclined, I will be forever grateful for your support. A donation in any amount will help. To donate, simple click here or copy and past this into your browser:
http://mcri.myelomacrowd.org/faf/donorReg/donorPledge.asp?ievent=1115055&lis=1&kntae1115055=9F5BDE4FC91E4BBF8EA1E4840F79CCB1&supId=423004428

Thank you for considering. I love my readers. You inspire me, you give me strength, and your friendship and support means more than you will ever know.

Regardless of your challenges in life, know that we have the internal strength to overcome. It is not always easy, but we are stronger than we can ever fathom. Go.Fight.WIN!!!

Much love,
Lizzy

PLEASE consider donating to my Myeloma page-- Let's find a CURE for this cancer!

Dearest Readers,

I NEVER ask for donations. I have NEVER done a donation page for ANY organization. Not once. I have donated generously, but never have I been the one doing the asking. Until NOW. The Myeloma Crowd Research Initiative has selected two potentially CURATIVE myeloma clinical trials to fund. These trials are happening NOW and are track-able. That means you can watch, participate, and track their progress. Your donation will NOT go into a Big Black Hole of "general donation" never to be heard and scene of again. I am raising funds to help move these exciting projects forward. The very lives of multiple myeloma patients DEPEND ON IT.

We can CURE this blood cancer but I need YOUR help to do this. If you are so inclined, I will be forever grateful for your support. A donation in any amount will help. To donate, simple click here or copy and past this into your browser:
http://mcri.myelomacrowd.org/faf/donorReg/donorPledge.asp?ievent=1115055&lis=1&kntae1115055=9F5BDE4FC91E4BBF8EA1E4840F79CCB1&supId=423004428

Thank you for considering. I love my readers. You inspire me, you give me strength, and your friendship and support means more than you will ever know.

Regardless of your challenges in life, know that we have the internal strength to overcome. It is not always easy, but we are stronger than we can ever fathom. Go.Fight.WIN!!!

Much love,
Lizzy

On lemonade stands, raising funds for myeloma & running for Lehi City Council

Our Lemonade Stand Fundraiser for MCRI: A Family Affair                  

BY LIZZY SMITH for www.myelomacrowd.org

I tend to keep my daughters very busy during summer months. So in addition to travel plans (we just got back from a very fun road trip to Seattle and Canada, and we are leaving for Florida in two weeks), camps, and lots of physical activities, Bill and I decide that they should also learn a bit about giving back to their community. What better way to do this than raise fund for the Myeloma Crowd Research Initiative (MCRI)?

So we have planned a series of lemonade and cookie stands in our neighboring town, Lehi, Utah. Bill is running for Lehi City Council  and has vowed to walk every major neighborhood in the city before Election Day meeting residents and business owners. He ordered up neon T-shirts with one side the Myeloma Crowd logo and the other a Vote Bill Conley Lehi City Council. I often join him on these walks and we are impossible to ignore. On one particular evening, we started off Bill’s walk with our lemonade and cookie stand. We raise $70 for my personal MCRI fundraising page!

Here’s how we did it:

1. My two daughters, 15-year old Morgan and 9-year old Siena, baked cookies the day prior. We kept it simple, buying ready-made cookie dough.

2. On the day of our event, we loaded up our car with a five gallon water bucket filled with lemonade, cups, our cookies, a table and signs that we were raising funds for cancer research.

3. While Siena and her two friends managed the donation table, Bill, my parents and I held up signs for Bill’s candidacy and the fundraiser.

We are hosting another lemonade stand next week on the same evening of a “Meet the Candidates” night. Since Bill will be at this event, we’ll set up across the street an hour prior and when we are done, attend Bill’s event and meet Lehi residents and discuss Lehi issues.

This is a fun activity that is also a family event. We all have a vested interest in helping find a cure for myeloma, after all. It is teaching my children some important lessons about what it means to do something selfless, and we have fun together doing it.

Consider doing something fun with your family and raising money for MCRI. For ideas to get you started, click here. Share with us your family activities or fundraising efforts at info@myelomacrowd.org.

MCRI Radio Show: Let's CURE myeloma! CAR T cells may just be the way to do it. Tune in Weds, May 27 11A CST

Tune in to Wednesday's Myeloma Crowd Research Initiative's show! This project could be a CURE for multiple myeloma! Let's WIN this battle. I think we are SO close. From www.myelomacrowd.org.
   

Our Next Show: The power of CAR T cells in Multiple Myeloma with Dr. Einsele and Hudecek, University of Würzburg, Wednesday, May 27 @ 11 CST

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

CAR T cells are a hot topic in multiple myeloma as an extremely powerful and potentially curative therapy. It is a highly personalized treatment because the patient’s own T-cells are redirected to eliminate cancerous cells using a targeted protein found on the myeloma cells. Learn what Dr. Hermann Einsele, MD and Dr. Michael Hudecek, MD are doing with CAR T cells to target the CS1 protein, commonly found on myeloma cells. 

Hermann Einsele, MD, is Professor of Internal Medicine and Director of the Department of Internal Medicine at the University of  Würzburg in Germany. Following his medical training at the Universities of Tubingen, Manchester, London and Seattle, he became a research fellow in the Department of Hematology/Oncology/Rheumatology/Immunology at the University of Tubingen, Germany. He was board certified in internal medicine in 1991 and became Assistant Professor in 1992. In 1996, he was board certified in hematology/oncology. He is a Visiting Professor at the Fred-Hutchinson-Cancer-Research-Center in Seattle, USA and the City of Hope Hospital, Duarte, USA.

Professor Einsele is a member of the American Society of Hematology, the European Group for Blood and Marrow Transplantation (EBMT), and the EBMT working parties for Infectious Disease and Immunobiology. He is currently a member of the board of the German Society of Blood and Marrow Stem Cell Transplantation. In 1999, he became Chairman of the German Study Group Multiple Myeloma. In 2003, he received the van Bekkum-Award of the European Society of Blood and Marrow Transplantation. He has published > 350 articles in peer-reviewed journals. His research interests include multiple myeloma, stem cell transplantation and adoptive immunotherapy. He is a member of the board of the German Lymphoma Group. In April 2011 he was elected Honorary Fellowship of the Royal College of Pathologists (London).

Dr. Michael Hudecek, MD,  leads the CAR T cell lab work at the University ofWürzburg. Dr. Hudecek obtained his MD with summa cum laude from the University of Leipzig, Germany, and performed his post-doctoral research fellowship at the Fred Hutchinson Cancer Research Center in Seattle, WA, USA. Dr. Hudecek joined the University of Würzburg in 2012 as a clinical fellow and research group leader.