The MDS Foundation Kicks Off First-Ever 5K MDS Awareness Walk in Boston, July 20th

YARDVILLE, N.J., July 16, 2018 /PRNewswire/ -- The MDS Foundation, Inc., an international non-profit advocacy organization, today announced it is holding its inaugural 5K MDS Awareness Walk in Boston at the Boston Common on Friday, July 20 to help raise awareness about Myelodysplastic Syndromes (MDS), an often under-diagnosed rare group of bone marrow failure disorders that affects an estimated 12,000-20,000 people each year (or an average 33-55 people each day) in the United States.^1,2,3 While great strides have been made in advancing innovative research and treatments for MDS, the MDS Awareness Walk, which is expecting patients, family members and caregivers to participate, is designed to bring together the MDS community, enable stronger connections and accelerate progress leading to the diagnosis, control and cure of this disease.

"We believe the time is now to embrace the wider community in our efforts to provide hope for the patients suffering from MDS," said Dr. Stephen Nimer, chairman of the MDS Foundation. "Inspired by those impacted by this devastating disease, we are starting a movement of hope with our first-ever MDS Awareness Walk as part of an effort to elevate the conversation more broadly about the unmet needs of MDS patients. We need to bring more attention to this under-diagnosed, difficult to treat blood cancer and its impact. One of our goals is to better connect the MDS and rare disease communities, helping to establish the need for future MDS awareness walks across the country."

Known as a rare form of blood cancer, MDS causes the body to no longer make enough healthy, normal blood cells in the bone marrow. For some patients, the disease may progress to a life-threatening failure of the bone marrow or a rapidly growing cancer of the bone marrow cells known as acute myeloid leukemia (AML). In fact, approximately one out of three MDS patients (or 30 percent)¹ progress to being diagnosed with AML.¹ MDS has a tremendous impact on patients' quality of life, often preventing them from participating in and enjoying activities in their daily life.

"Although significant progress has been made in our understanding of MDS, the disease remains severely under-diagnosed in the U.S. and worldwide ― we still have a lot of work to do to better recognize and diagnose cases of MDS, as well as to identify new vulnerabilities in MDS so that we can more accurately treat individual patients," said Andrew M. Brunner, M.D., assistant in medicine, Massachusetts General Hospital Cancer Center and instructor in medicine, Harvard Medical School.  "I am honored to be part of this important day in helping to spread awareness of this disease, bringing together the MDS community, and ultimately with a goal to further advance research and treatments that patients so desperately need."  

The MDS Awareness Walk is made possible by the support of like-minded organizations who are committed to the MDS community and share a sense of urgency in addressing the unmet needs for the thousands of patients, families and caregivers impacted by MDS. Sponsors include Takeda Oncology (Gold Sponsor); Acceleron Pharma, Inc. and Janssen Oncology (Silver Sponsors); and Agios Pharmaceuticals, Celgene, Daiichi-Sankyo, Astex Pharmaceuticals, Novartis, Onconova Therapeutics, Otsuka Pharmaceuticals, Samyang Biopharm, and Syros Pharmaceuticals (Bronze Sponsors). Additionally, hundreds of supporters have made donations in support of the mission of the MDS Foundation.

"At Takeda Oncology, we are dedicated to developing novel medicines that have the potential of improving the lives of patients living with cancer, and our role in the inaugural MDS Awareness Walk underscores our commitment to this aspiration," said Fatima Scipione, senior director, patient advocacy at Takeda Oncology. "We are thrilled to have the opportunity to be a sponsor of this important event and look forward to walking for patients and families in this community that need our continued support." 

The MDS Awareness Walk will kick off at 9:00 a.m. with onsite registration, followed by opening remarks provided by Dr. Andrew Brunner of Massachusetts General Hospital Cancer Center, an MDS Center of Excellence. Participants will come together to walk around the Boston Common starting at the intersection of Charles Street and Beacon Street, concluding with a closing ceremony at 12:30 p.m.

To learn more about MDS, please visit here. For more information about the MDS Awareness Walk, and for those who are interested in donating to the MDS Foundation, please visit here. Information can also be found by following @MDSFoundation on Twitter.

Additionally, the MDS Foundation is hosting a Patient and Family Forum on Saturday, July 21 from 9:30 a.m. to 2:00 p.m. at the Courtyard Boston Downtown. For more information and to register, please visit here.

About Myelodysplastic Syndromes (MDS)
Myelodysplastic Syndromes (MDS) are an often under-diagnosed rare group of bone marrow failure disorders that affects an estimated 12,000-20,000 people each year (or an average 33-55 people each day) in the United States.^1,2,3 It is believed there are an estimated 87,000 worldwide diagnoses of MDS each year⁴. Although the exact number is unknown, it is estimated there are 60,000-170,000 people living with MDS in the United States,⁵  with this number expected to rise over time, due to those patients who remain undiagnosed. 

Known as a rare form of blood cancer, MDS causes the body to no longer make enough healthy, normal blood cells in the bone marrow. For some patients, the disease may progress to a life-threatening failure of the bone marrow or a rapidly growing cancer of the bone marrow cells known as acute myeloid leukemia (AML). In fact, approximately one out of three MDS patients (or 30 percent) progress to being diagnosed with AML.¹

While MDS can be life-threatening for everyone, it's particularly concerning for the elderly. In fact, the disease is most commonly found in those who are 60 years of age and older (75 percent) of diagnosed MDS patients), and the average patient is 73 years old.⁶ The disease can also affect children.⁷

About The MDS Foundation, Inc.
The MDS Foundation, Inc. is an international non-profit advocacy organization whose mission is to support and educate patients and healthcare providers with innovative research into the fields of MDS, Acute Myeloid Leukemia (AML) and related myeloid neoplasms in order to accelerate progress leading to the diagnosis, control and cure of these diseases. Founded in 1994 by world-renowned researchers dedicated to furthering scientific knowledge, patient support and education in MDS, these same researchers continue to work closely with the organization to enhance these efforts.

For more than two decades, the MDS Foundation has been working towards improving outcomes for patients with MDS through the efforts of patient advocacy, professional education and innovative research. We believe that by building a community of physicians, researchers, patients and caregivers, we can help to make potentially curative therapies available for all patients with MDS.

¹ Kurtin, S. Bennett, J. Greenberg, P. et. Al.  Building Blocks of Hope: Strategies for Patients & Caregivers Living with MDS. October 2017. Accessed: April 2018.
² Myelodysplastic Syndromes. Leukemia & Lymphoma Society. 2017. Accessed: April 2018. Retrieved from: https://www.lls.org/sites/default/files/file_assets/PS22_MDS_Booklet_2017.pdf.
³ Myelodysplastic Syndromes. National Organization for Rare Disorders. Accessed: April 2018. Retrieved from: https://rarediseases.org/rare-diseases/myelodysplastic-syndromes/.
⁴ Chihara D., Ito H., Katanoda K., Shibata A., Matsuda T., Sobue T., Matsuo K. (2014, August 2).  Incidence of myelodysplastic syndrome in Japan.  Retreived from http://www.ncbi.nlm.nih.gov
⁵ Cogle, C.R. (2015, September). Incidence and Burden of the Myelodysplastic Syndromes.  Retrieved from http://www.ncbi.nlm.nih.gov
⁶ Estey, E. H., Schrier, S. L. (2011, February 11). Patient information: Myelodysplastic syndromes (MDS) in adults (Beyond the Basics).  Retrieved from http://www.uptodate.com
⁷ About Myelodysplastic/Myeloproliferative Diseases. Dana Farber. Accessed: April 2018.

SOURCE MDS Foundation, Inc.

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