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LLS Quarterly Chapter Report

Western PA & WV Chapter

in this issue
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Blood Cancer Awareness Month

Cancer is Tough, But LLS is Tougher

Mission Moment - Recipe for a Cure

How You Can Help

Special Feature

CAR-T Treatment at UPMC Hillman Cancer Center

Local Fall Events

Over the Edge is Almost Sold Out!

Light The Night Walks in Western PA

Blood Cancer Conference - Oct. 20

Join the Hero Squad

What's Happening?

Introducing Our New Holiday Card Artist

Wanted: 15 High School Superstars!

Race to Anyplace

10 Weeks in Honor of 10 Years

Charity Runners

Here to Help

Become a Blood Cancer Advocate

Local Family Support Groups

First Connection Program

FDA Approval of New Precision Medicine Therapy

From the LLS Blog

Blood Cancer Awareness Month

Cancer is Tough, But LLS is Tougher

LLS is leading the way to cures, during Blood Cancer Awareness Month and beyond


Blood Cancer Awareness Month – every September – provides the opportunity for The Leukemia & Lymphoma Society (LLS), the world’s largest nonprofit dedicated to fighting blood cancer, to educate and engage the public about the blood cancers – leukemia, lymphoma and myeloma - which are the third leading cause of cancer deaths among Americans.

LLS is at the forefront of the fight to cure cancer, dedicated to finding cures for the nearly 1.3 million people in the U.S. who are living with, or are in remission from, leukemia, lymphoma or myeloma and other blood cancers.

“Cancer is not a one-size-fits-all disease. We prioritize research based on unmet medical needs, and are ushering in a new era of cancer therapy that centers on giving the right treatment to the right patient at the right time,” said Louis J. DeGennaro, Ph.D., LLS president and CEO. “Further, we are seeing our vision for and approaches to treating the blood cancers now helping patients with other cancers, which is why we are proud to say that beating cancer is in our blood.”

2017 was one of the most historic years on record for therapy approvals for blood cancers. In all, the U.S. Food and Drug Administration (FDA) approved 18 therapies to treat patients with blood cancers, and LLS supported 15 of them. To date, we have seen 10 FDA approvals for blood cancer therapies in 2018, and LLS has supported eight of these at some point in their development.

To read about the latest treatment advancements for leukemia, lymphoma and myeloma, CLICK HERE.

“Our long-term investment in research has resulted in significant breakthroughs leading to higher survival rates and lives saved, but at LLS, we do so much more,” DeGennaro shared. “To advance our mission we focus on cures and ensuring that patients have access to lifesaving therapies. We provide free information, education and support services for those who have been impacted by blood cancer. We fight for lifesaving policy changes at the state and federal level to ensure access to quality, affordable, coordinated care. We are committed to working tirelessly toward our mission every single day, until we find a cure.”

Mission Moment - Recipe for a Cure


BCAM Survivor Steve

Steve, NHL Survivor
San Antonio, TX

Shortly before Steve McHugh and his wife moved to San Antonio in 2010, the rising star chef was diagnosed with non-Hodgkin lymphoma (NHL) and spent a year undergoing eight rounds of chemotherapy. During treatment, he was in the middle of moving to San Antonio and helping to open a new restaurant. Between managing construction, organizing food vendors and working with the kitchen designer, he was able to find some time to go home and rest.

While going through chemotherapy, he read the pamphlets made available by The Leukemia & Lymphoma Society (LLS) in his doctor’s office. When his doctor told him that he was going to be put on the R-CHOP regimen, he had no idea what that meant. The resources helped him understand the therapies. “One of the drugs was rituximab, and I later found out that LLS funds dedicated to research were critical in advancing this therapy. That’s when I knew I had to get involved.”

Today, he is in remission and back in the kitchen. In 2013, he opened his first restaurant, Cured. The name has a meaning that is both medical and culinary – it serves as a reminder of his experience with blood cancer and his restaurant is known for savory charcuterie plates and cured meats. For two years, he volunteered with Light The Night Walk, LLS’s evening fundraising walks, and now he is a board member of LLS’s South Central Texas Chapter.

In September 2017, Steve hosted his third annual “Cured for a Cure Dinner,” which features five-course meals prepared by renowned chefs from across the globe. The dinner benefits LLS and has raised $120,000 to fund life-saving research.


The LLS resources in Steve's doctor's office helped him understand his treatment. Download or order your own FREE information booklets here.

How You Can Help

“Help raise awareness of blood cancer this month. Everyone can make an impact,” said Louis J. DeGennaro, Ph.D., LLS president and CEO. “Learn more about the LLS mission, volunteer and get involved in a fundraising campaign or donate to LLS directly.”

Become a Blood Cancer Awareness Month ambassador for LLS by doing one (or all) of the following:

1) Wear red to highlight Blood Cancer Awareness Month! Consider adding the LLS blood drop pin or another LLS logo product to your outfit. Wearing red presents a great way to introduce Blood Cancer Awareness Month into a conversation with a colleague, neighbor or others you run into during your day.

2) Put 1-800-955-4572, the Information Resource Center number, into your cell phone so that if you meet someone who has been diagnosed or knows someone who has, it is easy to direct them to this great LLS resource.

3) Introduce a new person to LLS. You can direct them to our website (www.LLS.org), invite them to an event or give them some LLS literature about blood cancers and the resources we offer.

Join the fight this September. Together we can all help spread the word during Blood Cancer Awareness Month! Visit  www.LLS.org to learn more.

LLS Display BeatingCancer Temp Fist 728x90

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Special Feature

CAR-T Treatment at UPMC Hillman Cancer Center

When Shari Kienzle felt ill after a vacation last September, she thought she had the flu. But when treatment didn’t help, and her symptoms became worse, she went to the emergency room.

“It was there where they started taking blood and saying something serious is wrong,” she says.

Doctors at UPMC Shadyside diagnosed Shari with diffuse large B cell lymphoma, a type of non-Hodgkin’s lymphoma. Because the cancer had developed so quickly and aggressively, she started chemotherapy at UPMC Hillman Cancer Center in Shadyside right away.

Blood Cells

Unfortunately, Shari had no response to the first two rounds of treatment, and her cancer spread into her spine. Around the holidays, she tried a third regimen – a combination of chemotherapy injected directly into her spinal column as well as through traditional IV. Again, the treatment didn’t stop the spread of her cancer.

“Obviously, it's very scary. I couldn't believe it was me that was going through that,” Shari remembers.

When her third treatment failed, Shari, the once active and on-the-go working mom, was debilitated. The cancer ate away at her bones, and she had a broken hip and leg, and a torn rotator cuff. Even her vision had become impaired.

Shari’s oncologist, James Rossetti, DO, suggested she try a fourth option – newly FDA-approved CAR T-cell therapy. Chimeric antigen receptor (CAR) T-cell therapy is a type of immunotherapy that uses the patient’s own genetically modified T cells (white blood cells) to find and kill cancer cells. UPMC Hillman Cancer Center is the only center in western Pennsylvania to offer this therapy to patients with certain types of blood cancer. 

Shari received her CAR T-cell therapy infusion in April. After the infusion, she suffered from neurological toxicity, from which she completely recovered. Shari and her husband came back to Hillman for her 30-day scan to see if the treatment had worked.

Shari and her husband couldn’t believe the results; her scan was completely clear, and she was cancer-free. Her body continued to heal, and about two months later, she started to feel well again.

“I feel great compared to where I was before and not being able to walk, or make dinner, or really leave the chair or couch very much. That's not where I am today. I'm really pushing myself, and I feel great,” she says.

Shari will continue to be closely monitored and undergoes routine scans, which remain clear. Now, she is ready to get back to her new normal. She remains grateful for Dr. Rossetti, her care team at UPMC Hillman Cancer Center, and the opportunity to have CAR T-cell therapy.

“There's not enough words to be thankful for the medical team, for the doctors, for the people that I've never met – the researchers. I know there's a ton of people in the background that have put time and energy into CAR-T, and thank you. Because of you, I'm sitting here today,” Shari says.

Local Fall Events

Over the Edge is Almost Sold Out!


Join The Leukemia & Lymphoma Society as we take the fight against blood cancer 270 feet above the city of Pittsburgh for the second annual Over the Edge event on Sept. 28! Participants will rappel 22 stories down the side of the Koppers Building downtown, all in the name of finding a cure!

Over the Edge is almost sold out! If you're still interested in rappelling, contact Becca Gregory immediately at Becca.Gregory@LLS.org to secure your spot.

Not sure you want to rappel, but still want to get involved?

  • Join us as a spectator:
    • William Penn Place (between Seventh Ave. and Strawberry Way) will be closed to traffic on Friday, Sept. 28 from 9:00 a.m. through 4:00 p.m., making it a perfect vantage point to watch our 68 amazing “Edgers” as they rappel down the Koppers Building all day long.
    • There will be food trucks and radio stations broadcasting live, so don’t miss the fun!
  • Volunteer:
    • Join us 22 stories above the city as a rope volunteer!
      • Rope volunteers will need to be available from 9:00 a.m. through 4:00 p.m. for training on Thursday, Sept. 27 as well as event day on Friday, Sept. 28.
    • Scared of heights, but don’t want to miss out? We have lots of fun and exciting volunteer opportunities on the ground!
  • Donate:

For information on Over the Edge, please contact Becca Gregory at Becca.Gregory@LLS.org.

Light The Night Walks in Western PA

when we walkCANCER RUNS

When we walk, cancer runs! Join us at one of our Light the Night events this fall:

Thursday, Sept. 27 at 6:00 p.m. – Erie Insurance Arena | Erie, PA
Presented by Erie Insurance

Saturday, Oct. 6 at 5:30 p.m. – University of Pittsburgh Johnstown | Johnstown, PA Presented by 1889 Foundation

Thursday, Oct. 11 at 5:30 p.m. – Heinz Field | Pittsburgh, PA 
Presented by Koppers, Inc.

Each year friends, families, and co-workers form teams to raise money in support of our mission. In the fall, these teams Light the Night at our annual walks where we gather together to celebrate, honor and remember those touched by cancer. Each walker carries a free iconic Light the Night illuminated lantern. Join us for a powerful survivor ceremony, honor loved ones in our remembrance pavilion and enjoy refreshments, children's activities and more. Bring your friends and family!

Questions about participating, volunteering or sponsoring? Contact Lauren DiMaria at Lauren.DiMaria@LLS.org or 412-395-2875.

Blood Cancer Conference - Oct. 20


Blood Cancer Conference

Pennsylvania Blood Cancer Conference
Saturday, October 20, 2018
9:00 a.m. - 3:00 p.m.
112 Washington Place
Pittsburgh, PA 15219

Join LLS for this FREE educational conference for patients, survivors, caregivers and healthcare professionals*.

The Blood Cancer Conference is one of many programs developed by LLS to meet the needs of patients, survivors, families and oncology professionals, the people who deal with blood cancer every day and the people who care for them. Blood Cancer Conference attendees receive the most current information and access to local resources to help navigate and make informed decisions about their treatment and survivorship.

For map and driving directions, please visit www.marriott.com

For information on how to register for the conference, please contact Angela Austin at
412-395-2882 or Angela.Austin@LLS.org.

*Healthcare professionals, please note: this is NOT a continuing education (CE) program.

Join the Hero Squad

Hero Squad Header

StudentSeries KennedyHeroes like Kennedy never take on cancer alone—they have a squad of people around them helping them get better. When your school participates in The Leukemia & Lymphoma Society’s (LLS) Pennies for Patients campaign, it helps cancer patients like Kennedy by raising critical funds needed to support blood cancer research.

Join Kennedy’s Squad: Register Today!

Just a few reasons to partner with us:

  • Schools participating in Pennies for Patients receive a comprehensive K-8 STEM curriculum, through which students will experience the commitment, creativity and curiosity that is at the heart of science.
  • Schools raising $1,500 or more will receive Amazon.com gift cards as a thank you gift.
  • NEW! In addition to the school-based thank you gifts already outlined, students will also have the opportunity to complete missions and earn individual thank you gifts!
  • Schools receive free marketing materials to make your campaign fun and meaningful.
  • NEW! We offer schools a revamped Hero Squad assembly experience to launch your campaign and motivate students.
  • Pennies for Patients is flexible and takes place over a three week period of your choice. Many schools choose to participate January – March.
  • Donations can be made online, by check, and by students bringing in coins and dollars at school. Students receive a thank you gift for collecting $50 or more in online donations.

Every hero needs a squad and together we change cancer! For more information or to register, visit: www.penniesforpatients.org

What's Happening?

Introducing Our New Holiday Card Artist

Help find a cure for blood cancer while showing your friends, family, and associates how important they are. Give a gift in their honor this holiday season by purchasing your holiday cards through The Leukemia & Lymphoma Society.

After 20 years, Mary Lois Verrilla, “The Lady Who Paints Pittsburgh,” has passed the torch to a new local artist. We would like to celebrate her legacy and tenure with The Leukemia & Lymphoma Society by having a mixed pack of previous designs available for purchase.

Introducing local photographer Emmanuel Panagiotakis as our new Holiday Card artist! Native to Chios, Greece, Emmanuel moved to the United States in 1988 with his wife to start their family. In 2004, Emmanuel bought his first digital camera. Quickly, he taught himself proper technique and technical perfection by reading the owner’s manual in his second language. Today, he dedicates his time traveling to bring the beauty of the outdoors into his gallery.

With his inaugural card, Emmanuel transports us to a beautiful Pittsburgh winter setting: The soft snow of the holiday season has arrived. Emmanuel's perspective overlooks the Roberto Clemente Bridge and the rest of downtown Pittsburgh from across the Allegheny River. This design, titled Home for the Holidays, welcomes all to enjoy the beauty of Pittsburgh during the festive winter season.

All cards measure 5" x 7" and the image is printed in full color on white cardstock. They can be ordered blank inside or with the standard greeting. Eighty cents of every $1 card is tax-deductible. They can even be personalized for you or your business for an additional fee. Add your company logo, electronic signatures, and more! By purchasing your personal or professional holiday cards through LLS, you will be supporting the valuable work that is being done by this organization.

To order your holiday cards, visit www.LLSHolidayCards.org. Please contact Kayla McGrath at 412-395-2877 or Kayla.McGrath@LLS.org with questions or for more information.

Emmanuel Panagiotakis holiday card design

Wanted: 15 High School Superstars!

SOY logoAs the new school year starts, many high school students are beginning again to focus on their futures: college and beyond. The Leukemia & Lymphoma Society can help!

Students of the Year is a seven-week leadership development program for high school aged students. Participants in the program develop professional skills such as public speaking, project management, entrepreneurship, presentation development and more as they assemble and lead a team towards raising as many funds as they can for patients and cancer research through LLS. The participant with the most funds raised at the end of the seven-week campaign receives a $2,500 2018 Student of the Year Kate Burke with Ian Coyle from Semper Gratus copyscholarship and a shadowing opportunity with a corporate-level executive in Pittsburgh. 

If you know a highly motivated high school student who would benefit from this opportunity and would like to nominate them to run for Student of the Year, please visit www.studentsoftheyear.org/apply or contact Kayla McGrath at Kayla.McGrath@LLS.org or via phone at 412-395-2877.

2018 SOY Grand Total Reveal copy

This past spring, seven extraordinary Students of the Year candidates raised $140,327 in just seven weeks.

Race to Anyplace

RTAP 2019

Are you ready to out-pedal cancer? The Race to Anyplace is back for its 19th year! Grab your friends, family, co-workers, and especially your workout buddies, and join us on February 23, 2019, at Heinz Field!

The Race to Anyplace is a six hour team stationary bike race! Each team can have up to 12 members, with each team member riding in 15 minute heats. The goal is to see which team rides the most miles, and which team raises the most money for lifesaving blood cancer research!

Each team as a whole must raise $750 to participate. (For example, divided evenly, a 12-member team would need to fundraise $63 per person.)

We hope to see you there!

For more information on The Race to Anyplace, please feel free to contact Becca Gregory at Becca.Gregory@LLS.org

10 Weeks in Honor of 10 Years

2019 MWOY AreYouTheNext Video

 Click the image to watch "Are You the Next Man or Woman of the Year?" on YouTube.

Man & Woman of the Year is celebrating its 10-year anniversary in 2019! Nominate someone today to be a part of this very special group of candidates who will set out to raise more money in only 10 weeks than ever before! Contact Jennifer.Miller@LLS.org or call Jen at 412-395-2868 for more information, candidate nominations, or sponsorship opportunities.


Charity Runners

CharityRunners 2019

Join the 2019 Charity Runners team for The Leukemia & Lymphoma Society! If you’re going to run the Pittsburgh Marathon, why not run for a reason?

You have the option to run the full marathon, half marathon, marathon relay, 5K run, kid’s marathon, or pet walk on our behalf!

Why join this amazing team?

  • A free bib for your preferred race
  • An amazing Charity Runners high performance shirt
  • Group training runs with certified running coach and personal trainer, Ken Presutti
  • Awesome fundraising incentives!

You can register for the team now at crowdrise.com. Or if you have any questions about joining the team, please contact Becca Gregory at  Becca.Gregory@LLS.org

Here to Help

Become a Blood Cancer Advocate

LLS recognizes that finding cures is not enough; we need to ensure that patients have access to the treatments, services and providers LLS Advocacy 2014they need to live longer, better, healthier lives. LLS is dedicated to removing barriers to care. By providing a network of advocates a powerful voice, the Policy and Advocacy Team drives policies that accelerate the development and approval of innovative treatments and ensure that patients have sustainable access to quality, affordable coordinated care. Our team is committed to ensuring that patients have access to adequate network of providers and services and are protected from high out-of-pocket costs that limit access to life-saving treatments.

Any individual that has had his or her life touched by a blood cancer can be an effective advocate. Sign up at www.LLS.org/advocacy or text SPEAK to 698-66 to join the LLS Mobile Action Network.

Local Family Support Groups

Family Support Group UPDATED Summer 2017

First Connection Program

First Connection Graphic

If you or a family member has been diagnosed with a blood cancer, you may find it helpful to speak with someone who has gone through a similar experience and learned how to manage the same disease you're trying to cope with each day. The Patti Robinson Kaufmann First Connection Program is a free service of The Leukemia & Lymphoma Society (LLS) that matches patients and their loved ones with trained peer volunteers who have shared similar experiences.

First Connection peer volunteers are in a unique position to provide support and community resource information to others facing a similar cancer diagnosis. Patients and their family members are matched with peer volunteers based on diagnosis, age, gender and other factors that might create a mutual understanding and ease of communication. Peer volunteers are trained in basic counseling skills, are regularly updated about LLS and community resources, and are committed to confidentiality.

The program gives patients and family members the opportunity to share experiences with someone who has "been through it," and obtain valuable information about LLS and the other resources available to support them.

To request a First Connection, visit this link.

FDA Approval of New Precision Medicine Therapy

Important advance for patients with few options

Progress in treating acute myeloid leukemia (AML), a blood cancer that takes more than 10,000 lives in the United States each year, took an important step forward on July 20 with the U.S. Food & Drug Administration (FDA) approval of ivosidenib (Tibsovo®) for patients who have a specific genetic mutation called IDH1.

LLS, a leader in the offensive against AML, applauds the FDA decision, which provides a critical new option for patients with this particular subtype. Ivosidenib, developed by Agios Pharmaceuticals, is an oral, targeted therapy indicated for AML patients who have relapsed or do not respond to standard chemotherapy and have the IDH1 genetic marker, which is found in approximately 6 to 10 percent of the 20,000 people in the U.S. diagnosed with AML each year.

After a 40 year drought in the approval of new therapies for this lethal disease, this approval marks the sixth approval for an AML drug in the past two years. Three of these approvals, including ivosidenib and its sister IDH2 inhibitor, enasidenib, are first-time approvals; the others are for new formulations, new indications, or reinstatement of agents approved previously. Through its research investment, LLS has played a significant role in helping to advance all of these approved therapies.

To continue reading this article, click here to go to LLS.org.

The LLS Beat AML Master Trial is a groundbreaking collaborative clinical trial targeting AML. Learn more here.

Western Pennsylvania & West Virginia Chapter
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The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. See how your donations are invested wisely.

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