New hope for people with AML – an interview with Kathleen Weis, CEO of the Aplastic Anemia and MDS International Foundation

Apr 30, 2018
New hope for people with AML – an interview with Kathleen Weis, CEO of the Aplastic Anemia and MDS International Foundation

Don’t give up hope, because the chances of finding a cure for acute myeloid leukemia (AML) are improving every day.

That’s the message from Kathleen Weis, CEO of the Aplastic Anemia and MDS International Foundation (AAMDSIF), to those living with this rare blood and bone marrow cancer, following this year’s AML World Awareness Day.

The changing treatment landscape

“There is a lot of research being done in AML right now and it’s really exciting to see. With all this energy, the chances of finding new therapies or even a cure increase day by day,” said Kathleen.

Kathleen explained that until recently, the picture was bleak for the approximately one third of patients with a myelodysplastic syndrome (MDS) who develop AML.1 The only available potential cure is a stem cell transplant, but most people who progress from MDS to AML are too old for the procedure to be successful.1

“The fact that there are new treatments coming through for AML is very promising, especially for those people whose disease has not responded to the currently available treatments,” said Kathleen. “We are now doing lots more work on testing and understanding the mutations that go into AML, which is key to identifying the best treatment,” she added.

Supporting the AML community

AAMDSIF was founded in 1983 to support, connect and educate people affected by bone marrow failure diseases, whether that be patients, caregivers or healthcare professionals.

“Our mission is to help patients and caregivers as they go through their journey of dealing with bone marrow failure diseases. We try to empower patients and help move the needle toward finding better therapies or even a cure,” said Kathleen.

One of the Foundation’s many initiatives is its educational conferences. There are two types: one for patients and families and one for healthcare professionals.

The patient conferences give people living with bone marrow failure diseases the chance to learn about the conditions and their treatments from experts.

“Attendees are in various stages of their journey – they may have just been diagnosed or they might be undergoing treatment,” said Kathleen. “Having access to an expert is good for them, and probably more important is meeting other patients who can share their stories. Hearing a success story can be so inspiring and important for people at an earlier stage of the disease journey.”

AML World Awareness Day

“As a rare disease2, AML is probably the least understood of the bone marrow failures as well as the blood cancers. Everyone knows about Hodgkin’s and non-Hodgkin’s lymphoma, but not much is understood about AML because it’s a very difficult disease,” said Kathleen.

The AAMDSIF is one of the advocacy groups around the world that spread the word via social media and events on AML World Awareness Day this April 21.

To find out more about AAMDSIF, please visit their website and join our webinar where Kathleen will join our panel of advocacy leaders to discuss ways to improve outcomes and quality of life for patients with AML.

Kathleen participated in our webinar, “Knowledge is power – using education and awareness to drive positive change for patients”, on May 3. To find out more and to watch on demand, please click here.


References

  1. Troy JD, Atallah E, Geyer JT, Saber W. Myelodysplastic syndromes in the United States: an update for clinicians. Ann Med 2014;46:283-9.
  2. S. Department of Health & Human Services Genetic and Rare Diseases Information Center (2015). Acute myeloid leukemia. Available at: https://rarediseases.info.nih.gov/diseases/12757/acute-myeloid-leukemia (accessed April 2018).
New hope for people with AML – an interview with Kathleen Weis, CEO of the Aplastic Anemia and MDS International Foundation

Author

Prior to being named CEO of AAMDSIF, Kathleen Weis was CEO of the American Red Cross Gold Country Region in Sacramento, California. She previously served the Red Cross in a variety of executive management capacities, including as its Chief Operating Officer in the same western region, which followed her position as Senior Director of Humanitarian/ Information Technology Service Delivery at the organization’s Washington, D.C. headquarters.

Before her extensive career with the Red Cross, Kathleen worked in the private sector for Allscripts Healthcare Solutions, the Bulletin of the Atomic Sciences and PriceWaterhouseCoopers. Currently, she’s a member of the steering committee for the MDS-Alliance – a worldwide collaboration of national MDS patient support and advocacy groups – and she’s on the board of directors for the National Organization for Rare Disorders (NORD).

Kathleen has previously served on the board of directors for TLCS, Inc., a Sacramento-based organization providing mental health and supportive housing services for people with mental health challenges. She holds a Master’s Degree in Public Service from DePaul University and received her B.A. in Communications from Michigan State University.

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