After her sixteen-year-old daughter was diagnosed with essential thrombocythemia (ET) in 1997, Celia Miltz decided to take action. She watched her daughter deal with this diagnosis and dedicated her life to raising awareness about people living with MPNs. Celia wanted to raise money dedicated to MPN research, and sponsored a golf tournament that raised upwards of $75,000 in its first year. In addition to more fundraisers through email and social media, Celia started the Friends of ET, a charity designed to provide funding for research into ET. She also served on the board of the MPN Research Foundation for many years, guiding the way Healthcare Professionals, patients, and caregivers understand MPNs. Celia is currently retired and living in Florida with her husband. She golfs frequently and spends as much time as possible visiting with her grandchildren.

Celia is an integral part of the larger MPN community and offers the perspective of a loved one and long-term caregiver. In addition to her fundraising efforts, she is known for her tireless dissemination of MPN information. Today, Celia has far exceeded the amount raised at that initial tournament, raising over $750,000 for MPN research.

Jaden Persaud’s mother, Jessica, has given her son a treasured family motto: "Blessings are not meant to be kept, they’re meant to be passed on." In 2015, Jessica was diagnosed with an unclassified, non-specific MPN, and, inspired by his mother’s courage, Jaden found the strength to act and continue the family tradition of passing blessings along. Jaden, who is now 12 years old, has devoted himself to taking care of his mother and contributing to their MPN community.

After personally experiencing how his mother's MPN affected her and their home life, Jaden was inspired to create a charitable organization named Stuffies for Survivors. He and Jessica also participate in the Leukemia & Lymphoma Light the Night Walk. To date, with support from local businesses, Jaden’s school, and individual donations, Jaden and his family have raised more than $2,000 for blood cancer research.

Jaden’s journey to spread MPN awareness has inspired a college student to document his efforts as part of an academic project. Their collaboration will help share Jaden’s story with others in the MPN community and further his efforts to fulfill the family motto by sharing the blessings he has.

Jean Diesch’s philosophy is "Having a rare disease is not so rare when you have one!" It’s a running thread throughout her efforts to spread fundamental information about MPNs to a wider audience. Jean was diagnosed with polycythemia vera (PV) in 2009. Since discovering that she had been living with a rare, chronic blood cancer, Jean has devoted herself to patient advocacy.

Jean founded a support group to make sure no one else has to struggle to find important information and expert advice about MPNs. She regularly invites experts to speak to her support group about topics relevant to the MPN community. Jean is also a mentor through the Cleveland Clinic’s 4th Angel Mentoring program, where she helps patients find resources and offers support for people living with the day-to-day realities of a rare blood cancer.

In addition to her advocacy, Jean raises money for MPN and cancer research. Jean is a regular attendee of the Light the Night Walk in Pittsburgh, where she has helped raise over $10,000 for the Leukemia & Lymphoma Society.

Lori Jemison is the Clinical Coordinator for the malignant hematology team at Froedtert Hospital. She works tirelessly to help people living with MPNs and runs a support group that welcomes anyone who copes with the daily difficulties associated with those diseases, from caregivers to newly diagnosed patients to post-transplant patients and beyond. Lori’s advocacy includes regular surveying of her support group to find out what kind of topics they want to learn about. She lines up expert speakers to educate the group on relevant topics and MPN developments and summarizes that information in a follow-up email for those who could not attend. 

Lori has organized an educational symposium about multiple myeloma and participates in the local Light the Night Walk, which benefits the Leukemia & Lymphoma Society. She even created an in-hospital Light the Night Walk for patients who are too ill to attend in person!

In addition to developing useful programs for patients and caregivers, Lori goes above and beyond for the people she supports. Lori will hand-deliver useful resources, show up with birthday cakes, and has even traveled over 100 miles to obtain a sick patient’s favorite food.

Working from her lab on the campus of University of California, Irvine, Dr. Angela Fleischman investigates the disease development of MPNs. She is committed to researching many different aspects of MPNs through the samples she collects from bone marrow biopsies stored in the Hematologic Malignancy Biorepository. For example, she is intent on discovering the mechanism that drives chronic inflammation in MPNs, evaluating the healthy bacteria that live in and on the body and their relationship to MPNs, and undertaking other important areas of MPN-focused research.

In addition to clinical research, Dr. Fleischman is engaged with developing platforms to help people learn more about MPNs and MPN-related resources. Dr. Fleischman organizes and helps maintain the We Are MPN website, an online hub for MPN clinical trials, educational resources, and dates for upcoming MPN-focused events. Dr. Fleischman has helped organize educational conferences about MPNs and hosts quarterly meetings about topics related to life with a chronic blood cancer.

When she’s not doing research or sharing educational resources about MPNs, Dr. Fleischman runs marathons. She is currently trying to start a family bio-registry to examine the genealogical and generational development and occurrence of MPNs.

Bob Rosen was diagnosed with polycythemia vera (PV) in 1997. After his diagnosis, Bob devoted himself to furthering scientific research focused on MPNs. Bob formed the MPN Research Foundation, which has raised millions of dollars for MPN research and discovery since its creation in 1999. According to a fellow activist in the MPN community, Bob was "instrumental in growing focus on the MPN family of blood diseases among the blood-cancer related scientific community. The establishment of the Scientific Advisory Board with the leading MPN scientists in the world was a huge step forward."

Even up until he passed away in early 2018, Bob dedicated a significant portion of his time to MPN activism. When he began his foundation, it operated on a shoestring budget. Bob was a product of the Chicago real estate market and used both his business acumen and hard-charging work ethic to grow the foundation into one of the world’s leading forces for MPN research. Given his dedication and perseverance, it is hard to accurately measure Bob’s overall impact on the MPN community. He is survived by his family who continue to honor his memory, his legacy, and his contributions to furthering medical investigation into rare blood cancer research.

Richard French’s daughter Amber was diagnosed with essential thrombocythemia (ET) in 2003. Even though, prior to Amber’s diagnosis, Richard had never heard of this class of rare blood cancers, he discovered that hundreds of thousands of people were battling MPNs. A broadcast professional with decades of experience in developing professional communications, Richard wondered how he could help elevate awareness about MPNs in the general dialogue about cancer research. As he explains: "you couldn’t hear the MPNs over the other cancers."

Richard used his connections in the world of broadcasting to raise the profile of MPNs on a national scale. He crafted a specially designed public service announcement (PSA) about people living with MPNs and had it professionally produced and edited for free, thanks to his broadcast connections. Richard then developed a database of 840 TV stations across the nation. He contacted each one to ask them to run his MPN PSA. Hundreds of stations agreed. Because the Federal Communications Commission requires TV stations to run PSAs at no charge, Richard was able to save a great deal of money and raise MPN awareness across the country. As a result of Richard’s efforts, TV stations can now easily download and run the MPN PSA at videopsa.com.

Richard, who is now retired, fills his time as an amateur portrait painter and bowls with his wife, DeAnna. When he isn’t tinkering with the PSA to get it ready for Blood Cancer Awareness Month, Richard and his wife spend time with their 16 grandchildren.

Marcy Worthington is a List Owner for MPN-NET, an online support group dedicated to MPN-related topics. Marcy’s position as List Owner means that she engages in a personal and supportive way with others in MPN-NET. She does everything from comfort newly diagnosed patients to answer a high volume of emails to offer encouragement and direct group members to the appropriate MPN resources. Marcy was diagnosed with polycythemia vera (PV) in 2002. While investigating what it meant to be part of the MPN community, Marcy got to know Joyce and Bob Niblack of the MPN Education Foundation. Since Marcy was already a talented photographer, she played a key role in documenting the MPN Education Foundation bi-annual Joyce Niblack Conferences. These gatherings attract world-renowned MPN specialists and advocates and, in her position as a photographer, Marcy helps share the events with those who cannot attend in person.

In her normal routine, Marcy cares for her husband and two dogs and teaches classes on forensic science. In addition to communicating with hundreds of people living with MPNs through MPN-NET, Marcy takes the time to share new studies and journal articles. She knows that many patients do not have MPN specialists nearby and must become experts on their own. Marcy will always take the time to send someone vital information that they can share with their doctor to help both the patient and Healthcare Professional make the most informed decisions.