“Collaboration is key to changing the future for those diagnosed with childhood cancer!”

With the help and support of our growing Elevate contributors, we are bringing hope.

We’ll begin with Elevate’s Founder and CEO, Robyn Spoon, who will share our first-quarter achievements through our collaborative efforts. Then, you’ll hear directly from Elevate workgroup members and collaborators who are making an impact to dramatically improve the lives of those diagnosed with childhood cancer through working together!

Here’s Robyn: 

 “By attending the ACCELERATE platform in Brussels, Belgium in February, I was able to firm up relationships across all major stakeholders from around the world (FDA, EMA, scientists, oncologists, radiologists, surgeons, pharmaceutical companies, biotech, investors, advocates) and create some new ones! I participated in working meetings to decentralize clinical trials for kids, which will hopefully lead to increased participation in the trials—this increases access to trials AND helps the trials recruit more patients to learn the best new treatment options quickly. I brought back with me an increased understanding of the problems facing drug development for kids with cancer, which is key if we are going to be a strong contributor to solving these problems! Face-to-face meetings are critical to establish trusting and effective relationships.

   The Rhabdo-Coalition is our first significant collaboration with outside foundations. Elevate has a strong commitment to supporting the work and collaborations of the coalition. This is a loosely formed group of nonprofits focused on improving of outcomes for those diagnosed with rhabdomyosarcoma (RMS). The group comes together to share updates happening in the world of RMS, represent RMS in a range of advocacy venues (like larger coalitions), and has been responsible for bringing leading scientists and oncologists from around the world together to expedite the development of new therapies for RMS and improve the treatments for those diagnosed.

I am not a big fan of attending meetings and conferences without outcomes.

After the fall “Summer’s Way RMS Workshop” supported by the members of the coalition (including Elevate), we’ve been busy actively achieving the goals identified at that workshop.

Here’s a snapshot of the goals and the progress we’ve made so far: 

1. Improve access to scientific/clinical data for RMS to scientists and oncologists:

a) We’ve been hearing for far too long that gaining access to clinical and scientific data is getting in the way of scientists and oncologists, so Elevate agreed to take the leadership role to bring about these needed changes. Our goal? By the end of June we hope to have a paper ready for publication articulating these challenges and making recommendations so that the advocates will have a clear road map to guide their advocacy efforts! I have no doubt our Elevate Rhabdo workgroup members will jump at the chance to help advocate for the recommendations!

2. Prioritizing drugs for RMS:

a) We’ve been involved in a drug prioritization team of the leading institutions engaged in clinical trials for rhabdomyosarcoma, headed up by Sharon Hammond, of Summer’s Way, and Alan Ehrlich, of Focus on Rhabdo. The goal is to better understand what’s getting in the way of bringing therapies into clinical trials for RMS and fix those problems! 

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   The first quarter of 2024 also brought into fruition the core of our efforts: The Elevate workgroups. We have begun piloting this program through the Elevate Wilms and Elevate Rhabdo workgroups. It has been wonderful seeing families impacted by childhood cancer come together to build these programs from the ground up. In many cases, our advocates have been hoping and working on change for others who will face childhood cancer. In this space, we hear those ideas and concerns and begin to tackle them one at a time! In the winter of 2025, we will launch virtual symposiums for patients/caregivers impacted by Wilms tumor or Rhabdomyosarcoma. These events are being carefully curated by our workgroup members.

   It’s been exciting to see passionate Elevate workgroup members honing their skills to impact the world of childhood cancer. Whether it’s making a commitment to sharing more accurate awareness information across social media, starting their own non-profit, making new connections to grow their existing efforts, using their voice to share their story in the halls of Congress or with their state legislators, writing their first ever blog article or setting a goal to create that new initiative, we are honored to be part of the overall effort to make incremental changes towards our mission of saving and improving the lives of those diagnosed with childhood cancer.”  

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   Want to hear from some of our incredible Elevate Rhabdo workgroup members?

YES!!!

See how the collaboration between the nonprofit Taylor’s Dream and Elevate makes a great combo!

“My involvement with Elevate Rhabdo has been deeply transformative, both personally and as an advocate for families facing childhood cancer. At the heart of Taylor’s Dream is the mission to create lasting memories for families, echoing Taylor’s wish for a normal childhood.

Collaborating with a dedicated group of women and men in Elevate Rhabdo has been instrumental in my healing journey through grief. Together, we strive to advocate for improved treatments and targeted therapies, aiming to shape a brighter and healthier future for our children.”

-Amber Friesen, Taylor’s mom

Elevate believes ‘kids should be kids,’ which means that they shouldn’t have to worry about the hassles of adult life and “beating their own cancer.” 

   Instead, we believe that kids should be able to enjoy their childhood and all the innocence that comes with that.

We love that Taylor’s Dream’s mission echoes these sentiments! 

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Now, it’s our  Elevate Wilms turn to share about collaboration!

“I’m very excited to join Elevate in the crucial mission of finding new ways to propel research forward for our children with cancer because our family has learned the hard way that there are gaps and bottlenecks in childhood cancer research, and that they create a deadly environment for some of our kids who need new, more effective options.  These gaps and bottlenecks in the process exist from lack of awareness, lack of funding, and sometimes even simply from lack of collaboration. Elevate seeks to change that.“

-Lucy Sandeen, Elayna’s Mommy

 Unravel Iowa shares, “Unravel is honored to join forces with Elevate because we understand the need for true collaboration to drive meaningful change in pediatric cancer research. In the urgent mission to improve outcomes for children battling cancer, every voice and perspective can be powerful. From the families desperately seeking effective treatments, to the dedicated pediatric oncologists, researchers, and scientists working for cures, and those working in pharmaceuticals and legislation, it’s clear that collective action is key to quickly accelerating progress. Time is of the essence for children with cancer, and we are committed to working to ensure that no time is wasted in advancing innovative solutions.”

Unravel says it so well,

“Don’t be sorry, be active.” 

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Be on the lookout for at least one special topic webinar this summer with our Elevate workgroups!

Your donations are making it possible for us to have the resources needed (IT support, powerful webinar software, industry knowledge) to give families access to the highest quality, most pertinent information to guide treatment decisions, survivorship, and more. We’ve been humbled to see a host of providers  (oncologists, scientists, mental health professionals and more) get excited about these events, and even tell us that these are needed to make a difference now!

 Until our family faced childhood cancer, we had no idea how uncertain and confusing the entire diagnosis, treatment, and survivorship process can be!

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Now, here’s where you come in: Elevate is beginning to hone in on financial investments needed to support critical projects coming out of this effort. We have several fundraisers in the works right now to support our goals, but we will need your help. We are always grateful for every dollar donated directly through our “Donate Today” option.

We can’t do any of this without you!