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Multiple Myeloma Research Foundation - MMRF
Приєднався 23 кві 2009
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)(3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy's diagnosis with multiple myeloma, an incurable blood cancer.
The mission of the MMRF is to accelerate a cure for each and every myeloma patient. As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $500 million since its inception and directs 90% of total budget to research and related programming. As a result, the MMRF has been awarded Charity Navigator's coveted four-star rating for 18 years, the highest designation for outstanding fiscal responsibility and exceptional efficiency.
For more information about the MMRF, please visit: www.themmrf.org
The mission of the MMRF is to accelerate a cure for each and every myeloma patient. As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $500 million since its inception and directs 90% of total budget to research and related programming. As a result, the MMRF has been awarded Charity Navigator's coveted four-star rating for 18 years, the highest designation for outstanding fiscal responsibility and exceptional efficiency.
For more information about the MMRF, please visit: www.themmrf.org
Fatal to Fearless: How Kathy Giusti and the MMRF changed the entire disease-fighting system
Kathy Giusti is a business leader and a healthcare disrupter. She is a two-time cancer survivor, having been diagnosed with multiple myeloma and breast cancer. Kathy co-founded the Multiple Myeloma Research Foundation (MMRF) where she served as CEO and President for nearly two decades. She also co-chaired the HBS Kraft Precision Medicine Accelerator, which she helped found as a Senior Fellow at Harvard Business School.
Kathy is recognized as a pioneer in precision medicine, having seen its vast potential in oncology and other diseases. She uses her patient experience and business acumen to drive science faster with innovative models across registries, big data, clinical trials, and venture. Kathy is a champion of patient engagement, encouraging each patient to take initiative to optimize their own care.
Kathy has been named one of Time magazine’s 100 Most Influential People in the World and was ranked #19 on Fortune’s list of the World’s 50 Greatest Leaders. She has been featured in the Wall Street Journal, the New York Times, and Fast Company, and on the Today Show, Bloomberg, and CNN.
In 1998, soon after being diagnosed with multiple myeloma and given three years to live, Kathy founded the MMRF with her identical twin sister, Karen Andrews. At the time, there were no new treatments in the multiple myeloma pipeline. Having worked in leadership positions in the pharmaceutical industry, Kathy understood the industry’s scientific capabilities. But as a patient, Kathy had experienced the broken, dysfunctional healthcare system-and was motivated to use her knowledge and experience to change it. Read our Founders' story: themmrf.org/about/our-founders/
Under Giusti, the MMRF raised more than $500 million to fund research and has established partnerships and collaborative research models in precision medicine, including the Multiple Myeloma Research Consortium (MMRC), which has conducted nearly 100 trials, the MMRF CoMMpass™ study, CureCloud®, the Right Track, and the Myeloma Investment Fund. Since the MMRF was founded, 15+ drugs have been approved to treat multiple myeloma and many clinical trials are underway. These efforts have accelerated the pace at which treatments are brought to patients and have more than tripled patients’ survival.
As Co-Chair of the Harvard Business School Kraft Precision Medicine Accelerator, a $20 million program endowed by Robert Kraft and the Kraft Family Foundation, Kathy convened more than 300 leaders from throughout the healthcare ecosystem. She identified and published best practices for accelerating cures and created The Kraft Accelerator Playbook for Cures to help organizations across all disease states develop strategies to accelerate cures. Kathy continues to work with CEOs from disease-focused organizations to address their most important challenges and share solutions.
Kathy was appointed to President Obama’s Precision Medicine Initiative Working Group and served as an advisor to the Biden Moonshot program. She was named to the President’s Council of Advisors on Science and Technology (PCAST), the National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCPB). Kathy serves on the Board of Directors for EQRx and the MMRF. She serves on the Verily Advisory Board, the FasterCures Non-Profit Council, and the Harvard Business School Health Advisory Board. She is highly published with articles in the Harvard Business Review, Time, Forbes.com, STAT, and Nature.
Kathy received her MBA in general management from Harvard Business School and holds a BS and an honorary doctorate from the University of Vermont.
Kathy is recognized as a pioneer in precision medicine, having seen its vast potential in oncology and other diseases. She uses her patient experience and business acumen to drive science faster with innovative models across registries, big data, clinical trials, and venture. Kathy is a champion of patient engagement, encouraging each patient to take initiative to optimize their own care.
Kathy has been named one of Time magazine’s 100 Most Influential People in the World and was ranked #19 on Fortune’s list of the World’s 50 Greatest Leaders. She has been featured in the Wall Street Journal, the New York Times, and Fast Company, and on the Today Show, Bloomberg, and CNN.
In 1998, soon after being diagnosed with multiple myeloma and given three years to live, Kathy founded the MMRF with her identical twin sister, Karen Andrews. At the time, there were no new treatments in the multiple myeloma pipeline. Having worked in leadership positions in the pharmaceutical industry, Kathy understood the industry’s scientific capabilities. But as a patient, Kathy had experienced the broken, dysfunctional healthcare system-and was motivated to use her knowledge and experience to change it. Read our Founders' story: themmrf.org/about/our-founders/
Under Giusti, the MMRF raised more than $500 million to fund research and has established partnerships and collaborative research models in precision medicine, including the Multiple Myeloma Research Consortium (MMRC), which has conducted nearly 100 trials, the MMRF CoMMpass™ study, CureCloud®, the Right Track, and the Myeloma Investment Fund. Since the MMRF was founded, 15+ drugs have been approved to treat multiple myeloma and many clinical trials are underway. These efforts have accelerated the pace at which treatments are brought to patients and have more than tripled patients’ survival.
As Co-Chair of the Harvard Business School Kraft Precision Medicine Accelerator, a $20 million program endowed by Robert Kraft and the Kraft Family Foundation, Kathy convened more than 300 leaders from throughout the healthcare ecosystem. She identified and published best practices for accelerating cures and created The Kraft Accelerator Playbook for Cures to help organizations across all disease states develop strategies to accelerate cures. Kathy continues to work with CEOs from disease-focused organizations to address their most important challenges and share solutions.
Kathy was appointed to President Obama’s Precision Medicine Initiative Working Group and served as an advisor to the Biden Moonshot program. She was named to the President’s Council of Advisors on Science and Technology (PCAST), the National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCPB). Kathy serves on the Board of Directors for EQRx and the MMRF. She serves on the Verily Advisory Board, the FasterCures Non-Profit Council, and the Harvard Business School Health Advisory Board. She is highly published with articles in the Harvard Business Review, Time, Forbes.com, STAT, and Nature.
Kathy received her MBA in general management from Harvard Business School and holds a BS and an honorary doctorate from the University of Vermont.
Переглядів: 338
Відео
MMRF Road to Victories (R2V) Columbia River Gorge 2023 Full Feature Documentary
Переглядів 4933 місяці тому
Our MMRF Road to Victories team took on an incredible cycling route through the crown jewel of the Pacific Northwest - the Columbia River Gorge. The six-day adventure wound through this nature-lover's paradise, brought cyclists past the wild White Salmon River and along the historic Columbia River Highway, a National Historical Landmark. Cyclists pedaled through Willamette Valley through farms ...
MMRF Moving Mountains for Multiple Myeloma (MM4MM) Alaska 2023 Full Feature Documentary
Переглядів 1,1 тис.3 місяці тому
Our team of MMRF hikers who have been specially selected to form the Moving Mountains for Multiple Myeloma Alaska team embarked on the trip of a lifetime. Join us on a journey into the vivid wonderland of the mountainous region that emerges just outside Anchorage - we didn't have to go far to unlock the beauty and mystique that Alaska is famous for. Our journey had us crossing high mountain pas...
High-Risk Disease | High Impact Topic (HIT)
Переглядів 1,1 тис.3 місяці тому
Learn about high-risk myeloma: what it is, how it progresses, how doctors treat it, and what’s being done to better understand it. The MMRF wishes to thank the following reviewers and contributors: Melissa Alsina, MD and Nicholas Lenoir
Myeloma Matters Podcast | Caregivers
Переглядів 2764 місяці тому
In this episode, we’ll be discussing caregivers-the spouses, partners, family members, and friends who play such an important role in helping myeloma patients manage everything from health care visits to the activities of everyday living. Topics of discussion: · 1:14 The importance of being a caregiver · 20:06 Steep learning curve · 26:45 Alleviating burdens This episode is supported by AbbVie,...
Optimizing Your Outcome With MMRF Founder Kathy Giusti and Chief Mission Officer Anne Quinn Young
Переглядів 2,4 тис.4 місяці тому
Navigating a cancer diagnosis can be overwhelming. Most patients and families simply don't know where to start. In this fireside chat with MMRF Founder Kathy Giusti, we discuss this and more, including tools and approaches to maximize care and optimize outcomes that apply to myeloma patients - and all cancer patients. To purchase Kathy's book: www.kathygiusti.com/book
Driving Impact in 2024
Переглядів 1,6 тис.4 місяці тому
With the new year well underway, the MMRF is poised to make its greatest impact yet on behalf of the myeloma community. There is currently no cure for myeloma. Yet, each day we work relentlessly to advance new therapies, drive faster discoveries, and empower myeloma patients to achieve the best possible outcomes. And our success and impact within each of these areas will undoubtedly bring us cl...
Myeloma Matters Podcast | Maintenance Therapy
Переглядів 5277 місяців тому
In this episode, myeloma patients provide first-hand accounts on the importance of continuing treatment after induction therapy and autologous stem cell transplant-and about what to expect with this type of ongoing treatment. Topics of discussion: · 19:20 Getting on maintenance therapy · 30:23 Response after maintenance therapy · 31:45 Logistical and physical impact of maintenance therapy · 53:...
Research Program Updates | Myeloma Accelerator Challenge (MAC) Grants
Переглядів 2607 місяців тому
Research Program Updates | Myeloma Accelerator Challenge (MAC) Grants
CAR T-Cell Therapies | High Impact Topic (HIT)
Переглядів 1,1 тис.7 місяців тому
CAR T-Cell Therapies | High Impact Topic (HIT)
Research Program Updates | MMRF Virtual Lab
Переглядів 2948 місяців тому
Research Program Updates | MMRF Virtual Lab
A Health Equity Conversation with Anne Quinn Young and Dr. Monique Hartley-Brown
Переглядів 1758 місяців тому
A Health Equity Conversation with Anne Quinn Young and Dr. Monique Hartley-Brown
Myeloma Matters Podcast | Relapsed/Refractory Multiple Myeloma
Переглядів 7348 місяців тому
Myeloma Matters Podcast | Relapsed/Refractory Multiple Myeloma
Research Program Updates | Immune Atlas
Переглядів 5228 місяців тому
Research Program Updates | Immune Atlas
Myeloma Matters Podcast | Newly Diagnosed Multiple Myeloma
Переглядів 1,2 тис.10 місяців тому
Myeloma Matters Podcast | Newly Diagnosed Multiple Myeloma
Maintenance Therapy | High Impact Topic (HIT)
Переглядів 1,1 тис.Рік тому
Maintenance Therapy | High Impact Topic (HIT)
Bispecific Antibodies | High Impact Topic (HIT)
Переглядів 1,8 тис.Рік тому
Bispecific Antibodies | High Impact Topic (HIT)
Can you tell me what to look for,I have positive CD marks cd3 cd5 cd20 cd79a cd23 and pax5 Bcl2 so what to look for ,I have no cule
Great video, very informative
I swear this man is related to my step dad, he looks almost exactly like my step dads, dad when he was younger!
MY BREAST CANCER JOURNEY I’ve always been a healthy, active person. I don’t take any medications, I eat the best I can, and I walk at least two miles every day. I also get my routine mammogram every year. In November 2019, I went in for my annual screening. Several days later, my doctor called to tell me they’d found a suspicious area, so I needed to go back for a follow-up mammogram and an ultrasound. After that, a biopsy confirmed that I had breast cancer. When I received my diagnosis, my husband and I decided to get a second opinion. I’d heard good things about Nature Care Health Clinic, which happens to be a well known and certified clinic known for treating various types of chronic diseases and illness such as cancer, diabetes,tuberculosis,lymphoma etc Before this time, i was suppose to undergo Lumpectomy as suggested by my oncologist but he suggested and referred us to Nature Care Health Clinic cause he has had lots of similar cases as regards my diagnosis and most of them came out with positive testimonies.Not withstanding, we contacted the Clinic as He suggested, and we started our treatment with them following their prescriptions accordingly. Few weeks later, I began noticing drastic improvement in my body generally, this natural formula was so effective,It helps in lowering blood pressure and lowering blood glucose levels. Therefore, it is really good for hyperglycemic, Cancer and diabetic people. It also reduces fatigue, etc promotes tissue regeneration and so many other functions. I guarantee you will stand 100% chance to beat your condition. This formula helps to boost your immune system and can eliminate cancer cells from blood cells, it shrinks cancer tumors gradually. Trust me, this is one of the best treatments for cancer and the side effects that come after its treatments. This formula practically beats my thought and perceptions about natural products,I use to be a strong critic of such especially when it comes to chronic illness such as cancer. I am indeed happy that I gave it a shot and I can confidently assure you that a trial will actually convince you. have also recommended their services to many individuals as well and most of them can also testify positively to their services (even if i haven't got feedback from some of them). however i will leave their contact below just in case any one wishes to contact them, I am sure this will absolutely help so many individuals with similar illness you can always reach out to them via email: @ Naturecarehealthclinic@outlook.com
Thank you. very informative
This video needs to be shown to every newly diagnosed multiple myeloma patient
Given the recent acknowledgement that the renal "correction" for African Americans is not based on science and led to under diagnosing renal disease, how would that change these results and estimation of MGUS/MM diagnosis in that population?
I’m currently scheduled to undergo Stem Cell Transplant and this video was very informative. I’ve found to this point that I have responded favorably to the 3 21 day chemo and I too am optimistic. Todd experience was enlightening and as I’m listening to this broadcast it has provided me with the understanding of the process and expectations.
Very well done. Particularly appreciate the personal considerations - each individual is unique.
But how does the protein produced by the plasma cell relate to the antibody with the light and heavy chains of protein? No one ever explains that. They talk about the m spike...the paraprotein...the light and heavy chains... and the kappa and lambda....how do all these things relate...they are all produced by one plasma cell? Are some of them synonymous? Everyone assumes the patient has a background of knowledge that we don't have.
I am a multiple myeloma pt here in Italy...does this apply to us here Thank you ...grazie di ❤
Dear, the love of my life is going to start batteling her first relapse. I am scared and discouraged. I realise that we won’t grow old together. It’s killing me as well. Thank you for your work and your dedication to this field. Your intelligence is used to help others and that is beautiful.
What a great contribution to humanity ,patients like us❤ God
Very clear and succinct.
Ms. Guisti is such an inspiration and force in the fight against multiple myeloma, what a blessing! I am just curious, exactly what type of myeloma does she have, i.e. IgG, IgA, IgM, IgE, or kappa or lambda light chain, or non-secretory, etc...and what treatment has she had? There are so many people that are still told (and many still believe) the 3-5 years prognosis, but 30 years is outstanding! It would be amazing if we could hear more of her personal story of how she's endured and thrived all these years! 🕊️🙏❤️🕯️
Thank you so much for your kind words, curiosity, and questions! Our Founder recently participated in a Livestream event with our Chief Mission Officer, Anne Quinn Young, where she discussed her myeloma journey more in-depth. Here is the link to that discussion: event.webcasts.com/starthere.jsp?ei=1658344&tp_key=82b1169819
@@TheMMRF Thank you so much for your reply, much appreciated! ❤️
Very good information and is presented in a manor that is easily understandable. Thank you for taking the time to explain our options. 👏🏾👍🏾🎗
Keep on riding! I'm rooting for all people with myeloma to keep living their best life. My husband fought it for 16 years before getting pneumonia during a stem cell transplant.
Please speak a little slower. It's a lot of info to take in even with rewinding.
You can slow the narration in settings, upper right on screen. 👍
Wonderful Video! It is fantastic to see (ex-)patients literally climbing mountains!!! And the good vibes 😎
This is amazing. Gives me more hope. Shows me I can do more with my life. Diagnosed in 2021at 58.
Good information
This gives me hope. I am a hiker who was diagnosed with non secretory MM in 2023. I had my SCT in December of that year. I long to be back on the trail. It would be an honor to one day join you. Thank you for this beautiful film.
Top shelf bak2bak vids! Wow! I'm so grateful to find all that critical information in one place. The slideshow was especially helpful and I don't feel as confused. Thank you for putting in so much effort. It has paid off in spades for me And many others I am sure!
Wonderful ....... Such great memories of my walk with you guys ...... Still walking with new hip !!! ...... Carry on the good work ..... Best regards Richard Bell
Excellent excellent excellent. Thank you sir!
I am just starting my treatment. Doctor wants to do stem cell eventually. I dont have any caregivers to help me out. I have no clue what I am going to do.
Thank you for taking your time to give this comprehensive and excellent presentation!
love this
Wonderful story, thank you. After my recent diagnosis, it is interesting that I am counting my blessings more now than ever.
Yes! It sharpens you focus, doesn't it?
Way to go girl! GOD'S BLESSINGS to you forever!❤😊
Tell em sister
Great video, i just had my bone marrow results. I am waiting to go through it all with my dr. One of the fish tests stated i have a LOW POSITIVE FOR PARTIAL 5'. My research says that puts me at stage 1. I am ready to fight this thing and get the cells down to zero. Can i get treatment at stage 1? Again, I appreciate this video. It really reinforced what I've been learning. I am working on putting together a great care team. Im really not trusting who i have right now.
Kathy Giusti and Anne Quinn Young have been leaders in finding a cure for multiple myeloma - Thank you!
I forgot to mention that I am a Multiple Myeloma patient; having gone through transplant and 24 month maintenance regimen. Now in remission maintaining with a cancer pill in a 28 day cycle to keep it in remission. Making healthy diet choices and keeping the exercises recommended to help stay healthy. Looking at you; I feel encouraged and hopeful that there is hope to live quality and many more healthy years. Emory Winship is the best💕thankful for inspiring stories like yours to bring hope. Thank you ❤
Very informative and encouraging. Thank you so much for giving such detailed and impressive information about living and dealing with Multiple Myeloma. You are a blessings. Let’s keep the faith ❤
So thankful for the info❤
Very informative, thank you for this video! I've been following y'all since my brother was diagnosed in 2001, and now I've been diagnosed with MGUS in 2022. The MMRF is a priceless organization that has been so extremely helpful to me and my family!
Speaking as a 10-year Myeloma survivor, this video is one of the best introductions to the Myeloma journey. The only thing missing is a referal to the International Myeloma Foundation as well.
Ian, this is wonderful. Where do you get your treatment?
THANK YOU for everything all of you are doing.
Thank you! This was very informative.
I was diagnosed 12 years ago at Stage 3 my medical history therefore indicates the myeloma has been active for twenty years. Currently I am not on treatment.
Grateful for the work you continue to do.
Excellent presentation and information. Thank you for helping me understand so much as a newly diagnosed MM patient. Will watch this again and again.
Good Explanation of MM! Appreciate it
This video was great!
I was diagnosed in August for Multiple Myeloma. I was anemic but at a very low level. I noticed that I got tired more easily and thought it was a rite of age where I was just slowing down. I do a lot of walking with my dog and seemed to be tired from doing so. My internist did some additional test and referred me to a doctor in the cancer center. They did the bone marrow biopsy, Pet scan and a 24 hour urine study. The biopsy confirmed that I had multiple myeloma. The PET scan showed no bone lesions or tumors and my kidneys were okay. In my last doctor visit we discussed referring me to the University of Virginia medical center for a stem cell transplant. Thank you Dr. Blue very much for your presentation!! It helped me think about my journey so far and to think about the future. My doctor was overjoyed with the results of my blood test. We were really knocking it back after only one month long cycle. In February I’ll complete my third cycle. I have the consultation with the UVA staff on February 5, 2024. I feel like I have a better understanding of where I’ve been and where I’m going. If I’m a candidate, I’ll go with the stem cell transplant. Your presentation of MDR was enlightening. It gave me hope. My cancer center has a great support team. This prognosis can take a toll on your mental health. Their team has a social worker who specializes with these issues and the session are free. She also set me up with a psychiatrist who could treat the depression and anxiety. I have the same treatment nurse for every treatment. She’s great! My doctor has a good manner and explains things quite clearly. I have a lot of confidence in him and based on your presentation, he doing all the things he should. Again, Dr. Blue thank you for this presentation!
Excellent information. Thank you
The bottom line is that there is no cure, the doctors keep giving you medication which will ruin your kidneys, heart and more. The cancer is a business for hospitals, doctors and medicine companies. They already have a cure for cancer but they don’t want you to know because they will lose billions every year.
My mom diagnosed with amyloidosis fro Amrita hospital kochi. But the sample needs to be send for mass spectrometry in mayo. Can u help me with procedures for sending sample from Kerala to mayo lab