IMF Patient Stories and Grant Award Reception – an evening of Hope & Research!

Robin Tuohy |

A program to the evening’s event — the IMF’s 2018 Brian D. Novis Research Grants reception

I’d like to give special focus to the IMF’s annual Patient Stories and Brian D. Novis Research Grants Reception. Attending this reception are multiple myeloma researchers, specialists, nurses, pharma partners, patients, caregivers, and donors; all of whom are on our team of Myeloma Warriors!

 

Valarie Traynham at the 2018 IMF Brian D. Novis Research Grants reception

Valarie Traynham at the 2018 IMF Brian D. Novis Research Grants reception

This evening begins with patients sharing their stories on Living Well with Myeloma. The evening’s first patient speaker was Valarie Traynham. Valarie lives in the Chicago area and is also attending the ASH Conference as the Support Group Leader of the Aurora IL Myeloma Networking Group. Valarie shared that the thing that carries her through everything else, is that she is stronger than she thought. Valarie was diagnosed in 2014. She immediately sought out a second opinion and stayed with that second doctor and his treatment plan. Her initial treatment was a regimen of Kyprolis, Pomalyst and dexamethasone (KRd) followed by transplant, then consolidation therapy with the same KRd regimen. Her treatment was a great success and she remains on Pomalyst as maintenance for more than a year now. After Valarie’s transplant, she felt a renewed sense of purpose and realized she wanted to accomplish the goal of graduating college. That day came, and on graduation day, wearing her cap and gown, she was overjoyed and relieved. Her first thought? “OK, you’ve finished this, what does it mean, and what do you want to do now?” Valarie continues to educate herself and empower others in her local Aurora, IL support group.  I am so very proud of Valarie and all she does and thankful to have her for a friend. My favorite quote from Valarie:  “Myeloma is something I have – it doesn’t have me.”

Ron Hood, Sue Hood, Jim Omel

Ron and Sue Hood, with support group leader Jim Omel

The second patient speaker was Ron Hood. Ron and his wonderful wife Sue, are from Omaha, NE. Ron knows a lot about teamwork and the importance of relying on each other to bring out our biggest strengths. I originally connected with Ron through Support Group Leader Jim Omel, who leads the Grand Island, NE group. Ron regularly attends this group and is happy to drive the 150 miles each way to ensure he continues to learn and to give back to the group by sharing. Ron’s story began while he was golfing. He swung the club and before he even hit the ball, his arm broke. His surgery to repair his arm included inserting an 11-inch rod between his elbow and shoulder. In February of this year, Ron began a treatment regimen of Darzalex, Revlimid and dexamethasone (DRd) with Xgeva. He gets the shot and monthly infusions all at once and says it’s as “easy” as these things go.  He’s happy to report that he has virtually no side effects, including no kidney side effects. Just a few weeks ago, Ron and Sue were on vacation in Arizona, and Ron played four rounds of golf! The trip was a great success for two reasons: (1) he did not break any bones and (2) he had no pain in his arm or anywhere else in his body. Ron jokes that the only downside to the trip was that he didn’t get the extra 20 yards on his drive that his surgeon had promised him when he inserted that 11-inch rod into his arm! My favorite quote from Ron is from his favorite poem: “Cancer cannot invade the Soul.”

Yolanda Paine

Yolanda Paine at the IMF’s 2018 Brian D. Novis Research Grants reception

The final patient speaker of the evening was Yolande Paine. Yolande and her husband Bill – who is her “Warrior In Chief” –  lives in Vancouver, Canada. They are active and enjoy spending time together traveling the world. Yolande inspired me with her extremely active lifestyle and determination to have a say in her treatment choices. Yolande was diagnosed with myeloma six and a half years ago, shortly after she had retired. She had gone to her family doctor and told him that despite his assurances and all test results, her instincts told her that something was not quite right. He agreed to refer her to a hematologist, who also thought nothing was wrong based on her past blood tests. But after years of her being so active and Yolande’s very strong woman’s intuition, she knew she needed to listen to her body. As a precaution, her hematologist ordered more detailed testing, which revealed the telltale M protein spike. In June, 2012, she was diagnosed with indolent smoldering myeloma. For four years, she was monitored and when numbers eventually started to climb, she had induction therapy of Cytoxan, Velcade, dexamethasone (CyBorD) and an autologous stem cell transplant (ASCT) in 2016. The year prior to Yolande’s transplant, she and Bill hiked the Camino trail from its start in South West France, up and over the Pyrenees, and into Spain! Post ASCT, Yvonne was again instrumental in “shared decision making” and expressed to her specialist that her preferred choice for maintenance would be Ninlaro. Yvonne continues on Ninlaro which has been very effective for her, plus the ease of treatment, just three pills per month. Yvonne’s closing message was to “live life well, with joy, each and every day.”

Next on the evening’s program is all about research! In 1995, the IMF established the Brian D. Novis Research Grant program in memory of its co-founder. The grants, awarded annually, promote research in all areas of myeloma to improve patient outcomes. These awarded are funded by people who do a member event for the IMF and direct their funds to go to research.

Here is a summary of the award recipients, their research, and the corresponding donors for each award.

 SENIOR GRANT AWARDS

 

From Left: Jennifer Scarne, Susie Durie, Dr. Robert A. Kyle, the award’s fundraisers, and Jetze Tepe, PhD

Jetze Tepe, PhD – East Lansing, MI, USA

  • Michigan State University
  • Chemistry
  • “Targeting c-Myc degradation to treat multiple myeloma”

Funded by 6th Annual Miracles for Myeloma 5K

Andrew Zannettino, PhD – Adelaide, Australia

  • The University of Adelaide
  • Myeloma Research Laboratory, Health and Medical Sciences
  • “Single cell sequencing to discover tumor-associated changes in the bone microenvironment of myeloma patients: identification of prognostic markers and novel therapeutic targets”

Funded by Laughs 4 Life

JUNIOR GRANT AWARDS

Jennifer Scarne, Susie Durie, Dr. Robert A. Kyle, Cindy Chmielewski, and Enrico Milan, PhD

From Left: Jennifer Scarne, Susie Durie, Dr. Robert A. Kyle, Cindy Chmielewski, and Enrico Milan, PhD

Enrico Milan, PhD – Milan, Italy

  • Ospedale San Raffaele
  • Division of Genetics and Cell Biology
  • “Manipulating endoplasmic reticulum homeostasis and secretory capacity against systemic AL amyloidosis”

Funded by Miles for Myeloma 5K

Jennifer Scarne, Susie Durie, Dr. Robert A. Kyle, Cindy Chmielewski, and Ken Maes, PhD

From Left: Jennifer Scarne, Susie Durie, Dr. Robert A. Kyle, Cindy Chmielewski, and Ken Maes, PhD

Ken Maes, PhD – Brussels, Belgium

  • Vrije Universiteit Brussel
  • Hematology and Immunology, Myeloma Center Brussels
  • “Unraveling the balance of tolerance and immunogenicity of multiple myeloma cells”

Funded by Miles for Myeloma 5K

Ryosuke Shirasaki, MD, Jennifer Scarne, Susie Durie, Robert A. Kyle

Ryosuke Shirasaki, MD, PhD, receives a Junior Grant Award.

Ryosuke Shirasaki, MD, PhD – Boston, MA, USA

  • Dana-Farber Cancer Institute
  • Medical Oncology
  • “Overcoming resistance to pharmacological degraders of myeloma oncoproteins”

Funded by Mission for Matt in Honor of Matt Blennau

 

Christian Edward Bryant, Susie Durie, Brian G.M. Durie

Christian Edward Bryant, BsC (med), MBBS, PhD receives a Junior Grant Award.

Christian Edward Bryant, BsC(med), MBBS, PhD – Sydney, Australia

  • Royal Prince Alfred Hospital
  • The Institute of Haematology – Multiple Myeloma Research Laboratory
  • “Dissecting the structural and functional heterogeneity of terminal effector CD8+T cells from MGUS and newly diagnosed MM patients in order to identify therapeutic targets and unlock their anti-myeloma potential”

Funded by Capt. Turner Ocean Swim

This evening concludes with all attendees having the opportunity to mingle, talk about research, life, hope for our future and . . . maybe someday soon, a cure for myeloma!

 

 

 

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