Spring/Summer 2021: Volume 14, Issue 1

Spring/Summer 2021

A publication of the IMF recognizing our supporters

Where There’s a Will, There’s a Way

Y STORY – Riding My �ike Through It All 3 M

iving Back By Having Fun 7 G

Also in this issue:  Celebrating Our Member Fundraisers 8  Last chance to win a trip to Hawaii 11

IMF Staff Susie Durie President & CEO

Dear Myeloma Warriors, It is my privilege to introduce this year’s edition of Making Miracles, a year in which we have all faced enormous challenges and yet remain a remarkable and resilient community. It’s now been 14 years since we started sharing your stories on these pages, and never have I been so inspired by your passion and determination.

Despite everything, so many IMFers still spent this past year organizing events that not only raised funds but also showcased incredible creativity, flexibility, and patience. The pandemic meant most of our member fundraisers in 2020 either took place virtually or happened with significant social distance – a “distance” that sometimes meant family and friends taking part from all around the country and the world!

In this past year, you still celebrated milestones, still ran races, and still played games. You still got out on your bicycles, took nature walks, and swam in the ocean. In short, you still kept doing what you love to do – and turned it into support and awareness for the IMF. In my letter last year, I noted that so many things were uncertain.

While that is still true, I’m also optimistic that this year we’ll have more opportunities to spend time together in “traditional” ways.

But what we’ve learned by connecting in the virtual realm has inspired us too, as you’ll see in these pages.

No matter what this year has in store, when you’re ready to plan your first or next fundraiser, the IMF is here to help you get started. In the meantime, thank you for continuing to inspire us, in ways we never could have imagined.

With warmest regards and deep appreciation,

Jennifer Scarne Chief Financial Officer

Diane Moran Senior Vice President, Strategic Planning

Lisa Paik Senior Vice President, Clinical Education & Research Initiatives

Daniel Navid Senior Vice President, Global Affairs

Dr. Joseph Mikhael Chief Medical Officer

Lynn K. Green, Ed.D. Senior Vice President, Philanthropy

Mimi Choon-Quinones, PhD, MBA Senior Vice President, Global Advocacy, Access, Policy & Research

Peter Anton Vice President, Marketing

Betty Arevalo Inventory Control Manager

Phil Lange Accountant

Suzanne Battaglia Senior Director, Member Events

Karla Lemus Assistant to Senior Director, Member Events

Nancy Bruno Regional Director, Support Groups Kelly Cox Director, Support Groups & Regional Community Workshops Danielle Doheny Director, Public Policy & Advocacy Serdar Erdoğan Director, Global Myeloma Action Network and European & Middle Eastern Patient Programs Heather Fishman Donor Relations Jon Fitzpatrick Support Group Coordinator Abigail Guzman Meeting Registration & Guest Relations Brenda Hawkes Director, Regional Community Workshops Paul Hewitt InfoLine Coordinator Kevin Huynh Web Specialist Marya Kazakova Editor-in-Chief, Publications Ilana Kenville Assistant Director, Member Events Missy Klepetar InfoLine Coordinator Sapna Kumar Manager, Marketing & Communications

Robin Levy Senior Director, Public Policy & Advocacy Amirah Limayo Senior Research Project Coordinator Jason London Coordinator, Marketing & Communications Jim Needham Publication Design Meghan O’Connor Administrative Assistant, Meetings & Events Selma Plascencia Director, Operations Annabel Reardon Director, Meetings & Events Joy Riznikove Database Analyst Miko Santos Web Producer Kelley Sidorowicz Regional Director, Support Groups Sarah Solomon Donor Relations Brando Sordoni Accounting & Distribution Rafi Stephan Assistant to the President Robin Tuohy Vice President, Support Groups Judy Webb InfoLine Coordinator Jonathan Weitz Donor Relations

IMF Board of Directors

Suzanne Battaglia Senior Director, Member Events 800.452.CURE sbattaglia@myeloma.org

Chairman Dr. Brian G.M. Durie Christine Battistini Andrew Kuzneski, III Yelak Biru Dr. Robert A. Kyle Prof. Dr. Mario Boccadoro Prof. Dr. Heinz Ludwig Loraine Boyle Dr. Edith Mitchell Susie Durie Charles Newman Martine Elias Dr. S. Vincent Rajkumar George T. Hayum Matthew Robinson Jason Katz Benson Klein E. Michael D. Scott

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STILL MAKES MIRACLES In 2013, when Sheree Pask started planning the first Mira­ cles for Myeloma 5K in Clark, New Jersey with her husband Ron Pask and their friend Gina Klemm, she envisioned that their fundraiser would become an annual event that not only engaged their community, but reached beyond their local borders as well.

where businesses who donated would promote their participation, became “Miracle Markers” displayed on the website. In their traditional version, participants honor the people they are running for with placards lined along a beloved “Remembrance Path.” For the virtual event, this special feature became a running banner that not only included names, but also personal mesRachel Leigh and daughter Aubrey from Team Believe sages. “A ‘scroll’ rather than a ‘stroll,’” Ron notes. In advance of the 5K, all registered participants were also emailed a “racing bib” to print and wear.

But never could Sheree have imagined the form this vision would take last year. “Right from the planning stages back in April 2020, we realized that the pandemic was as strong as ever, and of course we were concerned about everyone’s safety,” Sheree recalls. “If we chose to do Miracles for Myeloma, it would need to be a virtual event.”

“It’s a myeloma event for everyone, wherever you may live.”

They did choose to do it anyway. “We knew that multiple myeloma doesn’t stop due to the pandemic,” Ron says.

“Therefore, we felt that we still needed to continue with our fundraising efforts.”

In shifting their event to a virtual format, participants would run or walk a 5K wherever they lived, rather than gathering in New Jersey. The organizers chose to keep their original date of September 26, 2020, but because they were hopeful that the virtual event would attract participants in different time zones, they decided to create a looser time frame (rather than a strict start time) so that people could run the race at their convenience.

Team Big Rich featuring Big Rich

On the morning of September 26th, the organizers were energized, excited, and nervous for their first virtual event. They kicked it off with a Facebook Live video filmed in a backyard “lounge” they created – a way for everyone to connect at the beginning of the day despite the physical distance. To extend the communal experience, participants were encouraged to post their in- Matthew Matlosz, Team progress photographs to the event’s Matlosz Against Myeloma social media accounts throughout the day as they walked or ran the 5K in their own neighborhoods. The photos were also added to a special photo gallery section of the website.

Given those geographic and time differences, the event’s committee members explored what they could do to repliTeam Guys Guys with Team cate the communal Captain Melissa Solimine (middle) experience and reimagine some of the hallmarks of the traditional event. They decided to focus more marketing efforts to their social media platforms and to use their dedicated IMF webpage as their hub. The physical “Mile Markers” on the traditional race path, 800.452.CURE (2873)

On previous race days, the organizers and special guests have made speeches in front of a gathered crowd. For their virtual solution, the team posted a video to their website several months before the event that explained the nature of a virtual run. They also posted a taped video from Ilana Kenville, IMF’s Assistant Director of Member Events, thanking everyone for their participation.

(Continues on page 4)

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International Myeloma Foundation

VirtualAdaptation

THE IMF’S OWN On January 25, 2021 the IMF made its own pivot by shifting our annual Brian D. Novis Grant Awards Presentation to the virtual realm. The IMF’s Dr. Brian Durie and Susie Novis Durie hosted the event, which also featured remarks from Sheree and Ron Pask on behalf of Miracles for Myeloma 5K. Their grant’s recipient,

Dr. Eugene Morelli also spoke, as did his mentor, Dr. Nikhil Munshi. While we hope we can soon gather again in person, we are grateful that we were able to maintain this celebratory tradition that honors both the IMF’s wonderful member fundraisers and the cuttingedge research they support.

The IMF’s Brian D. Novis Research Grants provide critical funding for innovative myeloma researchers around the world who every day are making important strides for our community. We are grateful that despite the challenges this past year, Miracles for Myeloma 5K funded:

Eugenio Morelli, MD

Dana-Farber Cancer Institute – Boston, Massachusetts, USA

Characterization of RROL-driven Lipogenic Signaling in Multiple Myeloma Cells

A Virtual Race – continued from page 3

Ultimately, more than 300 participants took part in this virtual version, joining from 20 different states – a far wider geography than the event’s typical tri-state area. “Many of these people would not have participated otherwise!” Sheree remarks. “But this year, it didn’t matter where they were from.

Everyone had the same chance to be a part of it.”

raise money and awareness for myeloma has remained constant.”

As for their plans for their 2021 event, scheduled for September 18th, the organizers are waiting for more information from the science, medical, and public health fields to help determine whether the event will be held in person. While they hope that they can do so, they also feel like they’ve gained valuable experiences in the virtual pivot necessitated by the pandemic. “Whenever we do return to our ‘original format,’ we also would still like to do a portion of the event virtually, so that we can still connect with this wider range of people from other parts of the country,” Ron says.

Everyone who completed the race also received an online “Participant Certificate.” As in the past, medals were given out in various categories, including fastest times, teams with the most mileage, and teams with the most participants.

Despite the challenges and changes, the Miracles for Myeloma 5K team still raised the funds to support a new Brian D. Novis Research Grant, awarded to Dr. Eugenio Morelli – the ninth such grant they have supported since their debut event in 2013. “It truly feels amazing!” Sheree says. “Our hearts and souls are put into this event, and raising the funds for these important research grants has always been wonderful ‘icing on the cake.’”

“We love where we live in New Jersey,” Sheree adds. “But this was never considered ‘just’ a New Jersey event. It’s a myeloma event for everyone, wherever you may live.”

Editor’s Note: Whether it will be in person, virtual, or a combin­ ation, the 9th Annual Miracles for Myeloma 5K is taking place on September 18, 2021. For the latest information, please visit give. myeloma.org/miracles2021.

“This version still had that personal touch that we have always strived for,” Ron adds. “Although we weren’t together in person, and of course no hugs were exchanged, our desire to Making Miracles

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myeloma.org

Riding �y�ike

MY STORY:

by Julie Tuttle

THROUGH IT ALL

My story started in May 2019. I was about to go on a long bike ride with my husband, starting in our Springville, NY neighborhood. Minutes in, I was bitten by a dog, and the wound did not heal like it should.

After many doctor appointments, referrals, and blood tests, almost four months later they found the real problem: I had multiple myeloma, which I had never even heard of before.

The news sent me down a path of questions: “What is my life going to be like? Do I have to quit my job? Will I see my beautiful grandchildren grow?” Then I thought: “STOP. You’re going to be fine. You ride your bike 14 miles round trip to work every day – uphill both ways.” That’s not a joke, it really is!

I had to turn my mind to something more positive. So I called the IMF, because I wanted to do a fundraiser for the organization that had already helped me so much.

My husband and I have a particular bike ride that we love. It’s 45 miles round trip through beautiful countryside with lots of places to stop and get a cup of coffee. I thought it would make a great fundraiser with lots of others joining me. I planned a route, had my sister helping with logistics, used the IMF to create my event’s webpage, and BOOM . . . COVID. But I still wanted to press forward in some way. I trained by biking to my treatments. It felt great to be riding.

I found IMF’s website, and the first thing I read on its “Newly Diagnosed” page was: “You are not alone. The IMF is here to help.” I learned how to understand my numbers, about treatment options, and how far they have come over the years. I learned I can live a long life with myeloma. I printed an information booklet off the IMF’s website and invited my family over for an end of summer BBQ. As my grandchildren played, I handed out the booklet to my children and told them the news, along with: “I’m going to be okay.”

I held Julie’s Country to Town Ride for a Cure on May 30, 2020 – one year after the bike ride that led to my diagnosis. We kept it to only six people, but we had a great time. Then, I finally went in for my stem cell transplant in September. I’m feeling strong and hoping for another fundraising bike ride in 2021.

Then I waited for my numbers to make me ready for a stem cell transplant, and it was taking longer than expected. I knew

Back in May 2020, the local paper covered my event. In January, I heard from an old friend. She had read the article, and then her brother was diagnosed with myeloma in early 2021. She was calling me for advice. Giving it was easy: “Go to the IMF. Someone is always there to help.

YOU ARE NOT ALONE.” 800.452.CURE (2873)

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International Myeloma Foundation

AV irtualR ace

FOR MYELOMA RESEARCH

For Joe Popp, a fan of professional race car driving, COVID-19 shutdowns first led him to a new hobby—and ultimately led him to fundraising for the IMF. “Major racing events were cancelled, and professionals were resorting to virtual racing to entertain fans,” Joe explains. He thought it might be fun to give virtual racing, also called sim racing, a try himself. He quickly found that it combined his love of racing and his passion for new technology.

Within his league’s charity event, each driver designed their own virtual cars. Joe designed his cars in homage to the IMF’s Black Swan Initiative. “I’ve been a supporter of the research that the IMF is doing since we lost such a huge part of our lives – hoping that we can prevent those losses for others in the future,” Joe explains.

Since Joe was new to sim racing, he knew it was unlikely he would win the cash prizes attached to those races. Instead, he live-streamed his racing on Twitch, encouraging his family, friends, and growing online followers to donate to the cause as he raced around the virtual track.

His new pandemic hobby moving full-steam ahead, Joe joined a sim racing league that decided to form a series of races where every entrant would race for a cause, with cash prizes for each monthly race, which ran from October 2020 through March 2021. Joe quickly saw the opportunity this with his support of the IMF and created his Sim Race in the Winter Challenge tied to the league’s charity event. “My father-in-law passed away in 2014 from myeloma,” Joe shares.

“He was a great man whom I looked up to, and my family and I miss him dearly.”

“The competition of racing can't be denied, and that translates to sim racing even more as the danger of injury is non-existent,” Joe observes. “But the giving spirit of having donations and charity prizes given freely – and the sentiment of helping people being front-of-mind – shows how human kindness can shine through, even beyond good sportsmanship.”

MORE SMILES

for the� ause

For four years running, Kent Oliver had been successfully organizing Laughs 4 Life, a comedy event in Hattiesburg, Mississippi. But in 2020, when COVID-19 hit, Kent and his fundraising team came to realize that holding their traditional summer event would be impossible. “We were obviously disappointed,” Kent says, “yet we felt it was more important than ever to be able to help in this unprecedented year.”

Kent took the opportunity to incorporate a new layer of community art to serve as a call to action. The Hub City Smile Mural was created as a call-to-action that encourages Hattiesburg residents and visitors to #smilemore.

community to enjoy. It also provided both returning and new supporters to continue donating to the cause despite the disruption of their traditional comedy event.

“The mural is something that I’ve always wanted to incorporate into the Laughs 4 Life ‘brand’ as something that would more permanently represent the vision of our event,” Kent explains. Unexpectedly, the pandemic presented the right timing. “In a year like 2020, it was important to remind us all to find ways to smile.”

“Our Laughs 4 Life comedy event has provided a truly unique way to bring the community together—and it’s tough to recreate that virtually,” Kent observes. “That said, the pivot presented a challenge to be a little more creative, and I have to admit that I was equally proud of what we accomplished and the generosity that has been shown.”

Working with the artist River Prince, the Laughs 4 Life team created the hashtag as an interactive piece of art for the

Editor’s Note: This year’s Laughs 4 Life event is scheduled to be held on July 31st. Please visit Laughs4Life.com.

Making Miracles

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myeloma.org

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GIVING BACK BY

For the live-streaming component, Josiah secured donations of gift cards to incentivize giving. Donations also flowed in when tied to “challenges” for Josiah – such as completing a series of jumping jacks or singing a song – all while trying to successfully play the video game at hand.

Leading up to the event, Josiah was nervous, but he was determined to share his mother’s special ability to live life with faith and excitement. Ultimately, the event brought him joy. “I was overwhelmed by the generosity,” Josiah says. It was such a positive experience that Josiah made plans for a 2021 version, scheduled for May 9th (www.twitch.tv/lazerhawk05).

When Josiah Philipsen’s mother passed away from myeloma, he knew what to do. “She always told us, ‘I want a celebration of life where people are having fun and sharing stories about me,’” he shares. Since it was May 2020, Josiah organized that celebration in the virtual realm, and decided to create it as a fundraiser in order to support others in the myeloma community.

“I was overwhelmed by the generosity.”

Josiah was already a viewer of live streams for charity, and had been engaging in more live-stream content due to the pandemic. In honor of his mother and the many fun times he had with her and his six siblings, Josiah created More Memories with Mom, which live-streamed May 17, 2020 on Mixer, featuring his family’s favorite video games throughout the seven-hour event. For people who wanted to participate but weren’t as likely to live-stream, Josiah also incorporated Scrabble, a game his mother loved – and nearly always won.

Leading up to the live event, players could upload their scores to social media, with Josiah securing donors who tied their giving to the points accrued in each Scrabble game.

800.452.CURE (2873)

Josiah also notes: “What I like about live-streaming is that you can reach more people than just those who are physically close to you.” Indeed, More Memories with Mom reached audiences in six different countries. “It was a blast,” Josiah says, “and I truly believe it celebrated my mother’s life.”

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International Myeloma Foundation

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IN APPRECIATION OF Last year took many unexpected twists and turns for all of us – including those who were planning both new and returning fundraisers for the IMF. We are grateful that so many of our members were able to reconceptualize their events with safety precautions, social distance, and making use of the virtual realm. Still others were able to fundraise on our behalf while putting their actual 2020 events “on hold” with plans to return this year. Thank you to all of those who planned, executed, and contributed last year despite all of the odds.

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ember

Pam Poliakoff spearheaded a Walk for Myeloma Miracles and Joy Mays helped organize Schleicher’s Hikers.

Also sharing their athleticism with us were Jennifer Spieker and her Golfing Group’s Birdie for our MB, Trey Franks’ ironman training for his Legacy for Lily, and Julie Tuttle’s Julie’s Country to Town Ride for a Cure (see page 5). Casey Clark oversaw the Keeper Wars Ink soccer competition and Jan Capen oversaw a March Myeloma Action Month Mind/Body Event. Doug Farrell spearheaded Captain Turner’s Ocean Swim and Ed Curtis oversaw Masters Tennis for Myeloma.

Our runners, walkers, and hikers were among those who kept on going. Alexandra Rosen ran the Walt Disney Marathon and Chris Meier ran the Cincinnati Flying Pig Half Marathon. Stuart Kowalczyk created his own Multiple Myeloma Marathon Fundraiser. Jennifer Young Illanz and Danielle Peters ran their own Miles for Mom. The IMF Member Fundraiser Program oversaw the Miles for Myeloma Virtual 5K Run/Walk and Miracles for Myeloma 5K was overseen by Ron & Sheree Pask and Gina Klemm (see page 3).

Drinks and games have been of particular comfort to so many of us, so we’re grateful for Steve Weinstein’s Corks For The Cure and Josiah Philipsen’s More Memories With Mom via Mixer (see page 7). Francisco Ramos, Forrest Shaw, Andy Ostroff, and Josephine McAdam brought us their Anti-Cancer Trivia Night via Twitch and Tom Gallagher organized his own Trivia Night.

STAFF FUNDRAISERS

June 2020 through September 2020

Making Miracles

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Kent Oliver’s Laughs 4 Life event brought us a much appreciated #smilemore campaign (see page 6). Anne Iezzi hosted a Birthday Celebration for Ed Tomasulo, which was yet another happy occasion. No doubt smiles were also sent through the virtual campaigns of Jack Aiello’s Jack’s Education Grant, Jameca Barrett’s Sweet Big 16, and Brenda Riggs’ Ten to Win the Fight.

Joe Popp’s Sim Racing in the Winter Challenge took his automobile love to the virtual realm (see page 6).

Last – but certainly not least – this past year found us longing for new ways to find escape. Our own IMF staff created a series of IMF Summer Camp fundraisers, encouraging people to find safe ways to have fun doing their favorite joyful activities. Amy Klitsner had us dreaming of warm sun and beautiful beaches by generously providing us with her Hawaiian Retreat for Two (see page 11 for this year’s raffle).

Despite our many additional shifts to the virtual world this past year, IMF member fundraisers were also keen on keeping us fashion-forward with beautiful jewelry: Amy Klitsner brought us her Jewelry With A Cause and Beatrice Walczyk gave us The Tiny Bea. Artfulness was also expressed through Charlie Eddins’ Heritage Singers and Carol and Benson Klein’s ongoing Trooper Benson Fundraiser, showcasing the comic strip artwork of Bill Rechin and Don Wilder.

Whether you’re dreaming of lounging on a summer day or lacing up your sneakers for a vigorous run, your brainstorms can be turned into a fundraiser for the IMF! During these ever-changing times, we are here to help you think about what you can plan and safely achieve with your family, friends, and neighbors. Please reach out to Suzanne Battaglia at SBattaglia@myeloma.org or 800-452-CURE to start making your inspiration a reality!

Many car aficionados find art in the automobile, and Karen & Jon Foster celebrated that with their Guys & Gears Car Show.

C onsider� oining the

HOPE SOCIETY� oday!

Help us cultivate the future by joining the International Myeloma Foundation’s Hope Society. Monthly gifts starting at $10 support IMF core programs, including educational events, publications, the toll-free InfoLine and more!

Learn more at hopesociety.myeloma.org Members who give $20 or more per month receive two complimentary registrations to a Patient & Family Seminar per year. In addition, new members can select a limited edition Hope Society gift as a thank you for joining!

Ready to join? Contact Jonathan Weitz at 800.452.2873 Ext. 254 or jweitz@myeloma.org

800.452.CURE (2873)

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International Myeloma Foundation

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The IMF thanks you!

Making Miracles

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800.452.CURE (2873)

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International Myeloma Foundation

IMF �roducts

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M yeloma Warrior Wrist Bands (10-pack for $10) M yeloma Warrior Embroidered Hat ($18) M yeloma Warrior Heart Lapel Pin ($5) R ibbon of Hope Lapel Pin ($5) M yeloma Warrior Crew Sweatshirt, Dark Grey ($40) M yeloma Warrior Crew Sweatshirt, Heather Grey ($40) M yeloma Warrior Hooded Sweatshirt, Dark Grey ($40) M yeloma Warrior Hooded Sweatshirt, Heather Grey ($40) M yeloma Warrior Men’s T-Shirt ($40) M yeloma Warrior Women’s T-Shirt ($40)

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