Emotional & Physical Wellbeing: Exercise for Myeloma
Warriors: Sweating Out More Than Just Your Symptoms
Michaela Hillengass, RN, ACSM-CPT
Roswell Park Comprehensive Cancer Center, Buffalo, NY
Partnering with the IMF
Sylvia Dsouza, Vice President, Development International Myeloma Foundation
Q&A with Guest Panel
Day 1 Recap, Day 2 Announcements & Evaluations
Housekeeping Items
Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table. Program Evaluations: evaluations at the end of today.
Restrooms: Restrooms are located outside the ballroom to your right Badge Holders: Please return your badge holders and we can recycle them.
We greatly appreciate your time and feedback!
The IMF Support Group Team is Here For You!
Special Interest Groups
Special interest groups are designed as a supplemental support for specific populations of patients, in addition to their local Support Groups
Las Voces de Mieloma-founded in 2022
Designed for Spanish speaking patients only
Living Solo & Strong with Myelomafounded in 2022
Designed for patients without a care partner
High Risk Multiple Myeloma-founded in 2023
Designed to address the needs of the high-risk MM population
Care Partners Onlyfounded in 2024
Designed to address the needs and concerns of care partners
Veterans SIG-founded in 2025
For those who served our country
Smolder Bolder-founded in 2023
Created for people living with Smoldering Multiple Myeloma
MM Families-founded in 2021
For patients/care partners with young children
Philadelphia Multiple Myeloma Networking Group
Meets virtually on the 2nd Saturday of each month at 1:30 PM Eastern
Local Support Groups
Hackensack Multiple Myeloma Support Group
Meets virtually on the 3rd Thursday of each month at 10:30 AM Eastern
Central New Jersey Multiple Myeloma Support Group
Meets virtually on the 1st Wednesday of each month at 6:30 PM Eastern
Delaware Multiple Myeloma Support Group
Meets sometimes virtually on the 3rd Wednesday of each month at 6:00 PM & sometimes in-person on the 3rd Saturday of each month at 11:00 AM Eastern
IMF InfoLine
Connecting Patients to Resources…
Shortening “Time to Hope” for Over 1,000 First-Time Callers Each Year
Assistance with understanding lab results, terminology and disease state
Preparing for medical visits
Resource Information:
• Financial & Emotional Support
• Expert Myeloma Referrals
“Thank you so much for the informative conversation and all the time you spent listening and helping me decipher the MM lingo. What an amazing service!”
“Thank you for your response and excellent question suggestions for my hematology team.”
Written Education
Understanding Booklets
Tip Cards
Myeloma Minute Weekly Updates
Myeloma Today Quarterly News
Live Patient Education
2025 Live Patient Education
Patient & Family Seminars
• Boca Raton, FL – March 14 – 15
• Philadelphia, PA – May 2 – 3
• Los Angeles, CA – August 15 – 16
• Chicago, IL – October 3 – 4
Myeloma Community Workshops
• Virtual - March 4
• San Francisco, CA - March 29
• Atlanta, GA - April 5
• Edina, MN - April 26
• Denver, CO - June 21
• Virtual – July 29
• Seattle, WA - August 9
• Waltham, MA - September 27
• Raleigh-Durham, NC - November 15
• Virtual – November 18
Scan for Upcoming Events!
Hot Topics in Myeloma
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO Chief Medical Officer, International Myeloma Foundation
Patient Empowerment: Shared Decision Making
Teresa Miceli, RN, BSN, OCN
InfoLine Advisor, Nurse Leadership Board, Mayo Clinic - Rochester
Patient Empowerment: Participating in Shared Decision Making
Teresa Miceli, RN BSN OCN
International Myeloma Foundation - InfoLine Advisor, NLB Member, Support Group Leader (MMSS, Smolder Bolder)
Mayo Clinic – Myeloma Nurse Navigator
National Cancer Institute - Myeloma Patient Advocate
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
Goals
• Review Shared Decision Making (SDM) Concepts
• Identify Influencing Factors To Treatment Decision Making
• Discuss Strategies To Enhance Patient Empowerment & Promote Shared Decision Making
Patient-Centric Care
“The aim of shared decision- making is to ensure that:
• Patients understand their options and the pros and cons of those options.
• Patient's goals and treatment preferences are used to guide
Identify that a decision is needed: The HCP informs the patient that a decision is to be made and that the patient's opinion is important (Choice talk).
Understand the options:
The HCP explains the evidence-based options and their pros and cons. The patient expresses their preferences, and the HCP supports the patient in decision-making (Option talk).
Come to a decision:
The HCP and patient discuss the patient's wish to take part in the decision making and incorporate the patient's values and preferences into the decision (Decision talk).
Follow-up:
Review and evaluate the decision, adjust as needed
Benefits of Shared-Decision Making
Patients, regardless of age, want to be a part of treatment decision-making
Reduces uncertainty and alleviates concerns
Decisions reflect personal and family values and preferences
Requires staying informed
Promotes patient and care partner engagement and sense of empowerment
Positive impact on QOL and continuation on therapy
“The 'efficacy' of treatment means different things to different patients, and treatment decision-making in the context of personalized medicine must be guided by an individual's composite definition of what constitutes the best treatment choice.” Terpos, et al.
Factors That Influence Shared-Decision Making
Disease-Derived
Biology: Risk stratification, Urgent intervention needed vs time to consider options
Patient-Derived
Understanding complex treatment options
Physical and emotional wellness
Treatment: Availability/access, effectiveness, toxicity, current research
STRATEGIES FOR PATIENT EMPOWERMENT & SHARED-DECISION MAKING
Strategies: Stay Informed
Seek Information, Understand your options
Use caution considering stories of personal experiences
Your healthcare team members are resources
Use reliable and current sources of information
IMF Website: http://myeloma.org
• Publications
• Videos and Replays
• Future Events, both in-person & virtual
Strategies: Be Involved In Your Care
Consider your priorities
Consider your goals/values/preferences
Include your care partner/network in the discussion
Be a part of the conversation, create a dialog
Ask questions & express your goals/values/preferences
Ask for time to consider options, if needed
Arrive at a treatment decision together
Arrange follow up to review and adjust the plan, if needed
Strategies: Know The Members Of Your Team
Understand their different roles
Myeloma specialist and General Heme/Onc
Primary care: for health screening, general check ups, vaccinations
Sub-specialists: specialty needs
Stay connected
Keep a contact list of your providers
Know who to contact for more information Subspecialists
Strategies: Prepare for Medical Visits
Prepare
Medications: Bring a current list of prescribed and over-thecounter
Questions: Prioritize questions & concerns including financial issues
Paperwork needing medical signature (ex FMLA, prior authorizations)
Inform
Updates: Medical or life changes since your last visit
Symptoms: How have they changed (improved, worsened, stable)? Keep a symptom diary. Bring it along
Communicate effectively so your health care team can help
Follow Up
“Next Steps”: Future appointments, medication changes, plan of care. Ask for the information in writing or on your patient portal
Include a care partner, especially for pivotal appointments
Strategies: Prepare for Tele-Health Visits
Check with your healthcare team –
Is telemedicine an option?
What is the process and what technology is needed?
Are labs needed in advance? Do you need an order?
Preparation is similar for “in-person” appointment PLUS:
Location: quiet, well-lit location with strong Wi-Fi is best
Yourself: Do you need to show a body part - wear accessible clothing
Vital signs (blood pressure, temp, heart rate, weight) selfserve blood pressure cuff is available at many pharmacies and for purchase
Include a care partner, especially for pivotal appointments
Create a Care Network
Care partners assist in many ways
Myeloma causes the highest burden of symptoms, most commonly effecting people of older age with other medical issues. Care partner support is valuable in SDM
Attending medical appointments, being present to learn and discuss possible treatment options and alert the medical team of side effects to treatment
Some treatment options available only if care partner support exists
Care partners can be one person or a rotation of many people
Building a partnership is based in good communication
Finding the balance:
- helping the patient with needed activities while maintaining a sense of independence
- allowing the care partner to have time for good self-care
Key Take-Aways and Things to Think About
Over the next two days:
Evaluate where you are at in the process (What decisions need to be made?)
Absorb the information being presented (What are the options?)
Consider how the information impacts you and your family (What are your preferences?)
Create questions that will lead to better understanding (What more do I need to know before making a decision?)
Be an active member of your health care team
Shared Decision Making
Myeloma 101: The Big Picture Perspective with Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Teresa Miceli, RN, BSN, OCN, InfoLine
Advisor,
Nurse Leadership Board, Mayo Clinic – Rochester, MN
MM101: The Big Picture Perspective
Joseph Mikhael, MD, MEd, FRCPC, FACP
• Professor, Applied Cancer Research and Drug Discovery, Translational Genomics Research Institute (TGen), City of Hope Cancer Center
Teresa S. Miceli RN BSN OCN
Mayo Associate, Assistant Professor of Nursing
• Chief Medical Officer, International Myeloma Foundation
• Consultant Hematologist and Director, Myeloma Research, Phase 1 Program, HonorHealth Research Institute
• Adjunct Professor, College of Health Solutions, Arizona State University
Myeloma Research RN Navigator, Mayo Clinic, Rochester, MN
International Myeloma Foundation
InfoLine Advisor, Nurse Leadership Board, Support Group Leader
NCI Myeloma Steering Committee
How common is Myeloma in the US?
What Causes Myeloma? How/Why Did
I Get This?
Environmental Factors:
• Exposure to some chemicals
• Radiation exposure
Examples:
Agent Orange
Burn pits
Pesticides, Herbicides
Firefighter/First Responder exposures
Individual Factors:
• Age
• Family History of related disorders
• Personal History of MGUS or SMM
• Obesity
VA Study Documents Health Risks for Burn Pit Exposu
res
Leukemia and Multiple Myeloma Set to Be Added to List of Conditions Linked to Burn Pits
In most cases, the honest truth
WE DON’T KNOW
What is the Connection Between Bone Marrow & Myeloma ?
Hematopoietic stem cell
Red Blood Cells Carry Oxygen White Blood cell Fight Infection Platelets Prevent Bleeding
Photo Credit
Understanding (Mono)clonal Plasma Cells
Heavy Chain: G, A, M, D, E
Chain = M-Spike
65% IgG – most common
20% IgA – associated with AL Amyloid
5%
Less common: IgD, IgE, IgM
• AL-Amyloid
Is Myeloma the Only Protein Disorder?
• POEMS
• Light or Heavy Chain Deposition Disease
• MGCS = Clinical
• MGRS = Renal
• MGNS = Neuro
Condition
Clonal plasma cells in bone marrow
Likelihood
Myeloma
MGUS1-4
(Monoclonal Gammopathy of Undetermined Significance)
SMM1-5,8 (Smoldering Multiple Myeloma) Active Multiple Myeloma6-8
* In clinical trial
Multiple Myeloma and Myeloma Defining Events
Testing For Myeloma: Blood & Urine
Test Name
CBC + differential
Complete metabolic panel
Beta-2 Microglobulin (B2M)
What it means
Hemoglobin, WBC, Platelets
Creatinine, Calcium,
Albumin, Liver function
Lactate Dehydrogenase (LDH) Part of staging and risk stratification
Serum Immunofixation and
Protein electrophoresis (SPEP+IFE)
Immunoglobulins (G, A, M, D, E)
Free light chain assay with kappa/lambda ratio
Urine immunofixation & protein electrophoresis (UPEP+IFE)
Measures the level of normal and clonal protein Identifies the type of clonal protein
Measures the level of normal and clonal protein Identifies the type of clonal protein
This Photo by Unknown Author is licensed under CC BY-SA-NC
Testing For Myeloma: Imaging
Imaging:
– Skeletal survey: Series of X-rays; less sensitive than other techniques
– Whole body low dose (CTWB-LD CT )
– Positron Emission Tomography (PET/CT)
– Magnetic Resonance Imaging (MRI)
Healthy bone versus myeloma bone disease
This Photo by Unknown Author is licensed under CC BY-NC-ND
• Incorporates 2 antibody fragments to target and bind both tumor cells and T cells
• Brings target-expressing MM cells and T cells into close proximity, enabling T cells to induce tumor-cell death
Targets of Bispecific Molecule Vary
“Off the Shelf” Advantage
• No manufacturing process, unlike CAR T-cell therapy (but like ADC/belantamab therapy)
• Thus, no delay between decision to treat and administration of drug
ADC = Antibody-Drug Conjugate; BCMA = B-Cell Maturation Antigen; CD3 = Cluster of Differentiation 3; FcRH5 = Fc receptor-homolog 5; GPRC5D = G-protein coupled receptor family C group 5 member D
The Process of CAR T Cell Therapy
What about Disease Control and Cure in Myeloma?
Requiring Treatment Stable or Unmeasurable Disease, Receiving Treatment Control is the immediate priority with active disease Cure remains the overall goal
Defining “Cure” has many considerations: Minimal Residual Disease Negative (MRD-)
Time Off Therapy Functional Cure
Unmeasurable Disease, Receiving No Treatment Active Disease
Amanda Goodstadt, Esq. Senior Staff Attorney, Triage Cancer
This presentation provides general information on the topics presented. The authors and presenters are not engaged in rendering any legal, medical, or professional services by its presentation or distribution. Although this content was reviewed by a professional, it should not be used as a substitute for professional services.
No part of this presentation may be reproduced, distributed, or transmitted in any form or by any means, without the prior written permission of the author, except properly attributed, noncommercial uses permitted by copyright law. For permission requests, contact the authors at info@triagecancer.org
About Triage Cancer
Triage Cancer is a national, nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers.
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Don’t
Understand Health Insurance?
You Are Not Alone.
Source: 2017 PolicyGenius Health Literacy Survey
Cost to Have Health Insurance
• Premium: each month (fixed $ amount)
Terms: Costs
Costs When You Use Health Insurance
• Deductible: each year (fixed $ amount)
• Co-Payment: each time you get care (fixed $ amount)
• Co-Insurance / Cost-Share: each time you get care (%)
• Out-of-Pocket Maximum (fixed $ amount):
Dan’s Plan: Deductible = $2,000
Co-insurance = 80/20 plan
OOP Max = $8,000
Meet Dan
If Dan has a $102,000 hospital bill, what does he pay?
1. His deductible of $2,000
$102,000-$2,000 = $100,000 left
2. His co-insurance amount of 20%
20% of $100,000 = $20,000
But OOP max is $8,000. So, he would only pay the $2,000 deductible + $6,000 of the $20,000 co-insurance amount, for a total of $8,000.
Out-of-Pocket Maximums
Details . . .
There may be a separate out-of-pocket maximum for out-of-network services
Individual vs. Family Plans
• e.g., Individual $5,000 and Family $10,000
Marketplace Plans
• Out-of-pocket max = deductible + co-payments + co-insurance (medical care & drugs)
Some Employer Plans
• Doesn’t include deductibles
• Out-of-pocket max = co-payments + co-insurance
• Doesn’t include deductibles or co-payments
• Out-of-pocket max = co-insurance
• Doesn’t include prescription drugs
• Separate out-of-pocket max for prescription drugs = co-payments + co-insurance
Comparing Plan Options
$200 x 12 = $2,400 + $8,000 = $10,400
Total costs for year = (monthly premium x 12) + OOP max $275 x 12 = $3,300 + $6,000 = $9,300 $400 x 12 = $4,800 + $2,000 = $6,800
• Helps pay for premiums; and sometimes deductibles, co-payments, & cost-share
• Four types of MSPs:
1. Qualified Medicare Beneficiary (QMB – “Quimby”) Program helps eligible individuals pay for Part A and Part B premiums, as well as deductibles, coinsurance, and co-payments
2. Specified Low-Income Medicare Beneficiary (SLMB – “Slimby”) Program helps eligible individuals pay for Part B premiums.
3. Qualifying Individual (QI) Program helps pay the Part B premiums for certain individuals who are not eligible for Medicaid.
4. Qualified Disabled and Working Individuals (QDWI) Program helps eligible individuals pay their Part A premiums.
Help Paying for Medicare Part D - 2025
• Low-Income Subsidy (aka Extra Help): most people will pay no premium or deductible & have lower co-payments and cost-share
• May be automatically enrolled, but can also apply
• Pay no more than $4.90 for each generic/$12.15 for each brand-name covered drug
• www.ssa.gov/benefits/medicare/prescriptionhelp
• State Pharmaceutical Assistance Programs (SPAP): pays some premiums or drug costs
• Programs not available in every state: www.medicare.gov/pharmaceutical-assistance-program/state-programs.aspx
Consumer Protections: Appeals
• Denials of coverage (aka “adverse benefit determination” (ABD))
• Internal appeals
• External appeals (individual and employer plans)
• AKA: Independent or External Medical Review
• Conducted by an independent medical review organization (IRMO) or independent review entity (IRE)
• State Health Insurance Agency: Triagecancer.org/StateResources
• Cost: $0 if HHS process. Up to $25 if issuer contracts with IRO or uses state process
Hurdle: Knowledge
• Keep track of:
• Dates, times, and method of any contact (phone, email, etc.)
• Names of people you talk to
• Summaries of your conversations
• Any documents you send or receive
• Important dates
• Good time to delegate to family and friends
TriageCancer.org/AppealTrackingForm
Appeals Checklist
Understand why your claim was denied
Gather your evidence
Submit necessary paperwork
Pay attention to deadlines
Remember the Golden Rule
File external appeal if needed
Expedite appeal if appropriate
Stay organized
Don’t give up!
• Quick Guide to Appeals for Employer-Sponsored & Individual Health Insurance • Quick Guide to Access to Medical Records • Health Insurance Appeals Tracking Form • CancerFinances.org – Health Insurance Appeals Module • Recorded Webinar: Health Insurance Appeals • Animated Video: When an Insurance Company Says No
Managing Medical Bills
• From your insurance company:
We have received a claim We are processing your claim Explanation of Benefits
Managing Medical Bills
• From your provider:
• The bill
• Doesn’t always happen in this order!
• Wait for the EOB before paying any bills
• Check for mistakes
• Keep track and communicate with providers
• Ask questions
• Appeal denials
Do you qualify for hospital charity care?
Charity Care
Nonprofit hospitals are required to offer free or discounted health care to patients with certain incomes.
A/K/A financial assistance or ability to pay programs
Can include inpatient and emergency room services
Bill shouldn’t go to collections while application under review
Apply for help from Dollar For: DollarFor.org/TriageCancer
Negotiate!
•Contact providers if having trouble paying your bills
• When:
• Before unpaid bills sent to collections agencies
• What:
• Ask for more time
• Check to see if they would be willing to:
• Write off a portion of your bill;
• Negotiate a payment plan; or
• Accept a lower lump sum payment
Note: works with other creditors, too!
TriageCancer.org/Worksheet-BillTracker
• Paying co-pays & co-insurance when you visit a provider
• What to do if you have already met your OOP maximum?
• What to do when a provider asks you to pre-pay your co-insurance?
Payments from insurance companies and explanations of benefits
Any pre-authorizations
Dates, names, and outcomes of any correspondence with insurance companies or providers
Non-reimbursed or outstanding medical and related costs
Meals, lodging and travel expenses (including gas and parking)
Your medical records
*Some of these may be tax-deductible!
Educational events for:
Triage Cancer Conferences
• Individuals diagnosed with cancer
• Caregivers
• Health care teams
• Advocates & others
Topics:
• Being an Advocate
• Health Insurance
• Finances
• Getting Organized
• Being Prepared
• Employment & Disability Insurance
May 17, 2025 October 18, 2025
TriageCancer.org/Conferences
“Absolutely amazing. Triage Cancer Conference supplied me with a lot of details on information that I thought I knew....I was wrong. However, I do feel more confident in each of the topics that were discussed.” –Virtual Attendee
*Free CEs/Contact Hours for nurses, social workers, & patient advocates
*Free PDCs for HR professionals
“It is helpful to know this info at the beginning of a cancer diagnosis or at the VERY LEAST to know it exists, as you do not know what you do not know!” –Attendee
Upcoming Topics:
• June 26 ~ Navigating Health Care: How to Plan Ahead\
• July 22 ~ Accessing Clinical Trials
• August 12 ~ When Insurance Says “No”
Full Schedule & Registration: TriageCancer.org/Webinars
Recordings of Past Webinars: TriageCancer.org/Past-Webinars
*Free Contact Hour/CE for nurses, social workers, & patient advocates
*Free PDCs for HR professionals
Emotional and Physical Wellbeing: Exercise for Myeloma Warriors: Sweating Out Your Symptoms
Michaela Hillengass, RN, PA ACSM Department of Cancer Prevention and Control
Roswell Park Comprehensive Cancer Center Buffalo, NY
Introduction
Understanding the influence of Multiple Myeloma on bone disease, immune function, pain, and other factors
Impact of physical activity on these factors
What you can contribute to improve your own QoL
Practical ideas
Physical Activity
Hours of Physical Activity per Week
Exercise
Patterns in MM/SMM/MGUS Patients
(n=662)
Patients (n=129)
Participants in the HealthTree Foundation’s Cure Hub reported that their diagnoses have impacted their exercise habits. The number of hours per week declined from the five-year period prior to diagnosis to current levels, and participants hoped to be able to do more exercise in the future.
Benefits
of Exercise in Multiple Myeloma
Improvement of
• Muscle strength
• Mobility and endurance
• Neuropathy
• Activities of daily living (ADLs)
• Immune system
• Fatigue
• Pain
• Body composition
• Bone health
Symptoms from Myeloma and Myeloma Treatment
Unmanaged Myeloma can cause:
• Renal dysfunction
• Calcium elevation
• Low blood counts
• Infection Risk
• Blood clots
• Bone pain
• Neuropathy
• Fatigue
Side Effects of Treatment can cause:
• GI symptoms
• Renal dysfunction
• Low blood counts
• Infection Risk
• Blood clots
• Neuropathy
• Fatigue
Physical activity and strengthening can help manage many of these symptoms.
Tip: Keep a symptom diary. Note if symptoms change after starting and keeping an activity regimen
Clinical Significance of Bone Disease in Multiple Myeloma
• Approx. 90% of patients show lytic changes
• Patients with bone disease show a by 20% increased mortality
• Approx. 80% of all myeloma patients suffer from a pathological fracture => important reasons of morbidity: - bone pain - pathological fractures - hypercalcemia
Influence of BMI on progression to Myeloma
Kleinstern et al., Blood Cancer Journal, 2022
Increase in Muscle Strength
Scientific evidence:
EXIST Trial (Person et al., 2017): 18 weeks of resistance training
=> Grip strength from 35.5kg to 40.9kg
=> STS from 15.5-18.7
Pilot Study performed at Roswell Park Comprehensive Cancer Center (strength group) (walking group) (combined)
• Squat
• Sit to stand
• Going up and down the stairs
• Walking
• (source: findthatmeme.com)
Improved Mobility and endurance
Strength Training
Walking Combined
Effects of Exercise on Functional Parameters
Strength Training Walking Combined
Facilitation of Activities of Daily Living (ADL’s)
Bicep curls
Shoulder exercises
Squats
Arm raises
Balance exercises
Walking
Stationary bike
(source: fity.club)
Effects of Exercise on Functional Parameters
Strength Training Walking Combined
Example Exercises
• Stretches
• Muscle strengthening (which leads to better posture)
• => anecdotal reports of:
• Easier getting off the floor (also strength related)
• Having no pain in lifting heavy turkey into oven
Improved Neuropathy
Example Exercises
Balance exercises
e.g., lunges, staggered stance exercises, one leg exercises, on uneven surface
(source: marathonbook.com)
Impact on Immune System
CD4+ T helper cell and CD8+ cytotoxic T cell populations became less exhausted by the end of the six-month intervention.
Joseph 2023 ASCO
Joseph 2024 Clin Lymphoma Myeloma Leuk
Influenceable Factors - Immune System
• T cells exhaust over the course of myeloma disease and treatment
Volunteer your time at local races organized by the IMF to engage the community (local co-chairs)
Engage on social media to connect with others affected by myeloma and spread awareness and empower patients with knowledge and resources.
Intellectual capacity
Offer your expertise as a speaker or panelist at events.
Be a beta tester for various new tools and products and provide reviews and feedback
Want to Make an Impact: Designate Your Gift
• Research: The IMF is dedicated to finding a cure for multiple myeloma.
• Education: The IMF provides education for patients and caregivers.
• Support: The IMF provides support for patients and caregivers through inperson and virtual support groups.
• Advocacy: The IMF advocates for better access to care and more affordable options for myeloma patients.
Philanthropy Fuels Our Mission
Peer-to-Peer Fundraising
Peer-to-Peer Fundraisers are created from YOUR ideas. Starting a Fundraiser is easy and fun. They also make a world of difference in the myeloma community.
Join a IMF P2P event or start your own and engage your family, friends, co-workers, your network who honor your journey with myeloma and want to support you. Let them show you that you are not alone.
Ex: Hole in One Golf Tournament, Iceland Cycling Expedition, Miracles for Myeloma 5K Run/Walks (hybrid)
Join the HOPE Society (Recurring Monthly & Annual Giving Program)
Help us cultivate the future by joining the International Myeloma Foundation's Hope Society.
Monthly and annual gifts support IMF core programs, including educational events, publications, the toll-free InfoLine, and more.
Start with a monthly contribution and when ready turn it into a yearly commitment. You will be a part of likeminded individuals united in the quest to find a cure for myeloma and a better quaity of life for all myeloma patients.
Transformative Gifts (Major Giving and Principal Giving)
Gifts can be designated toward a specific program, project or initiative .
Is there something specific that resonates deeply with you and you want to see change happening?
Gifts can also be unrestricted, expendable and/or an endowment
P2P
Laughs 4 Life (Hattiesburg, MI, comedy celebration)-- 8 years, >1M raised
Peer-to-Peer (P2P) and Monthly & Annual Giving
Miracles for Myeloma(Clark, New Jersey, 5K run/walk) -- 12 years, >$1M raised
Iceland Cycling Expedition raised close to $1M in less than a year
Hole In One (Golf Tournament, Jackson, New Jersey)– Inaugural golf tournament that has raised $75K at the first event
Monthly & Annual Giving – HOPE Society
Join our flagship monthly and annual giving program, the HOPE Society.
Get invited to Regional Salon Dinners in your area with IMF leadership and KOLs.
Receive exclusive updates on research and trials fresh off the press.
Play a pivotal role in supporting our four pillars.
Support long-term initiatives that make a lasting difference.
IMF's Miracles for Myeloma Virtual/In-Person 5K Run/Walk Series
The IMF will lead five Virtual/In-Person 5K Run/Walks across the United States in the following regions (Goal: $100K net from each event)
• Miracles for Myeloma Virtual/In-Person 5K Run/Walk in Boca Raton, FL (03-15-2025)
• Miracles for Myeloma Virtual/In-Person 5K Run/Walk in Los Angeles, CA (04-12-2025)
• Miracles for Myeloma Virtual/In-Person 5K Run/Walk in Philadelphia, PA (05-03-2025)
• Miracles for Myeloma Virtual/In-Person 5K Run/Walk in Clark, NJ (09-13-2025)
• Miracles for Myeloma Virtual/In-Person 5K Run/Walk in Chicago, IL (10-04-2025)
Upcoming Peer-to-Peer Fundraising Events in 2025
• 7th Annual Schleicher's Hikers 5K
• Mission for Matt (Dinner, and Dancing)
• Jack's Education and Experience Grant
• San Fernando Valley Support Group Fundraiser
• Czerkies Memorial Golf Outing
• Inland Empire Walk/Run
• Walkathon & BBQ To End Multiple Myeloma
• Row for a Cure
International Myeloma Foundation’s Signature Marquee Annual Endurance
Three goals:
1. Raising awareness and visibility for multiple myeloma and a patient/care-partners journey to and through it (humanizing the disease)
2. Raising awareness and visibility for the International Myeloma Foundation
3. Raising critical funding to help accelerate research to find a cure for myeloma
Additional outcome that organically emerged – building a strong, interconnected myeloma community where all myeloma patients and their loved ones see hope, resilience and determination as part of the journey and feel empowered
• The 2025 Iceland Cycling Expedition will take place from Wednesday, August 27, 2025 through Tuesday, September 2, 2025.
• This signature marque event is a 6-day/7-night fundraising cycling challenge in the High Mountains of Iceland.
• Applications for 2026 will open in October 2025. Follow us on Icelandcyclingexpedition.com and/or myeloma.org/ice2025
Ashley Dieks (Patient) Garson, Ontario
ICE 2025 Participants
Dr. Saad Usmani (Myeloma Clinician and Researcher) Memorial Sloan Kettering, NY
Jered Haddad (Patient) Germantown, TN
Dr. Douglas Sborov (Myeloma Clinician and Researcher) Huntsman Cancer Institute at the University of UT
Richard Pampe (Patient) Jackson, WY
Dr. Jeffrey Zonder (Myeloma Clinician and Researcher) Department of Oncology at Wayne State University, MI
Tatum Byhre (Care Partner) Minneapolis, MN
Christian Hoff (Patient) Pittsboro, NC
Benjamin Freund (Patient) East Canaan, CT
Troy Fischer (Care Partner) Bloomington, IL
Katherine Podgorski (Patient) Toronto, Canada
Dr. Cristina Gasparetto (Myeloma Clinician and Researcher) Duke Cancer Institute, NC
Iceland Cycling Expedition 2024
Phare
Santa
Malibu Film Festival
Beverly Hills Film Festival
Tribeca Festival
Atlanta Film Festival
Palm Springs International Film Festival
Miami Film Festival
Flicker's Rhode Island International Film Festival
LA Shorts International Film Festival
11. Holly Shorts Film Festival Portland Film Festival
Leave a Lasting Legacy
Planned Giving
Join the Brian D. Novis Legacy Society and make a planned gift!
Gain immediate tax benefits
Potentially increase your income during your lifetime.
Continue to fund our core programs and four pillars.
Make a bequest (a gift from your estate)
Include a provision in your will or living trust.
Designated us as a beneficiary of a life insurance policy, or retirement plan (IRA, 401(k), or 403(b).
Leave us in your will is one of the most profound ways to support the people and causes important to you.
Corporate and Foundation Gifts
Your organization can contribute a corporate gift or foundation grant
Provide seed funding that is necessary to accelerate the path to a cure.
Reach Out to the IMF Development Team
We welcome you to continue to learn more about our programs, projects, and initiatives at the IMF and find alignment with your own philanthropic passion and as well as ways to deepen and strengthen your engagement with us. Reach out to the IMF Development Team to start a conversation on how you can make a difference in the lives of the people impacted by myeloma.
Sylvia Dsouza- Vice President of Development sdsouza@myeloma.org or (310)947-4126
Simona Grace- Director of Development, Major Gifts sgrace@myeloma.org or (818)487-7455 x 307
Kimberly Francis- Assistant Director of Development Peer-to-Peer Fundraising kfrancis@myeloma.org or (818)487-7455 x 304
Q&A WITH GUEST PANEL
Housekeeping Items
Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table.
Program Evaluations: evaluations at the end of today.
Restrooms: Restrooms are located outside the ballroom to your right Badge Holders: Please return your badge holders and we can recycle them.
We greatly appreciate your time and feedback!
Miles for Myeloma
5K
Welcome & Announcements
Robin Tuohy, Vice President, Patient Support International Myeloma Foundation
Understanding Clinical Trials
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
IMF PATIENT AND FAMILY SEMINAR
PHILADELPHIA
AGENDA
SATURDAY MORNING
Fireside Chat: What is the Future of Myeloma? With Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center
MedStar Georgetown University Hospital
BREAK
Breakout Sessions #1: Treating Myeloma
Breakout A: Newly Diagnosed: Frontline Therapy
Dan Vogl, MD, MSCE
Abramson Cancer Center, University of Pennsylvania, PA
Breakout B: Managing Relapsed Myeloma
David Vesole, MD, PhD
IMF PATIENT AND FAMILY SEMINAR
PHILADELPHIA
AGENDA
SATURDAY AFTERNOON
Advocacy Update: What you need to know
Danielle Doheny, Director of Public Policy and Advocacy International Myeloma Foundation
Putting the Pieces of the Puzzle Together
Patricia Mangan, RN, MSN, APRN-BC
Abramson Cancer Center, University of Pennsylvania
Closing the Gap: Health Disparities in Myeloma
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Breakout Sessions #2: Patients and Care Partners
Breakout A: Patients Only – Lessons Learned
Michael Tuohy, 25-year Myeloma Patient, Support Group Leader
Breakout B: Care Partners Only
Robin Tuohy, Vice President - Patient Support International Myeloma Foundation & 25-year care partner
RETURN TO MAIN SESSION
Grab-and-Go Refreshments
Controversies in Myeloma: Moderated by Dr. Joseph Mikhael
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center
MedStar Georgetown University Hospital
Dan Vogl, MD, MSCE
Abramson Cancer Center, University of Pennsylvania, PA
Ask – the – Experts w/ Guest Faculty
Closing Remarks & Evaluation
Thank you to our sponsors!
5:00 – 7:00 PM Welcome Reception
Please return to this ballroom
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
IMF Core Values:
These are the core values we bring to accomplishing our mission each day.
Patient Centric
The patient experience is the focus of everything we do. Every interaction is an opportunity to establish a personal connection built on care and compassion which is the basis for continued support.
Respect All
As a team, we value honesty and transparency while creating a culture of mutual respect. We foster a myeloma community built on sincerity, authenticity, and kindness.
Excellence and Innovation
We value accountability, personal responsibility, and a steadfast commitment to excellence. We respect the legacy and reputation of our organization while seeking new solutions and advancements to improve outcomes, quality of life, and access to the best available resources for everyone impacted by myeloma.
Honor differences
We recognize each team member's skills and talents through collaboration and cooperation. Our programs aim to celebrate and support the diversity of our patients and their communities.
