Three Significant Rhabdomyosarcoma Initiatives

         Jump-Started at Denver Workshop!

   Elevate Childhood Cancer Research and Advocacy, Inc. partnered with four leading rhabdomyosarcoma-focused foundations to bring dozens of the leading rhabdomyosarcoma physician-scientists and clinicians together for two days of non-stop, roll up the sleeves work to bring about improved diagnosis, treatment and survivorship for those impacted by the disease!

   Elevate CEO, Robyn Spoon, has been collaborating with Summer’s Way Foundation, Focus on Rhabdo, Maddie’s Promise, SebastianStrong, and Friends of TJ for over a year in advance of this biennial workshop established in 2018 by participating foundation members. Experts came together from all over the world, including Belgium, the UK, Germany and all across the US from Dana-Farber, Harvard, Johns Hopkins, Duke, NIH, Texas Children’s, Baylor, University of Washington, St Jude, and more.

 

So, what happened? 

 

These two days felt like we had all jumped into a therapy development sandbox for rhabdomyosarcoma, with physician-scientists, clinicians and basic biology scientists sharing what they are working on, and gaining insight from others on their early findings! It can take years for their work to become publicly available. These scientists and clinicians work in institutions and hospitals all over the world, and they thanked our foundations for providing them with a chance to set aside their other tasks for a few days and focus exclusively on gaining up to date information on rhabdomyosarcoma from their expert peers

The workshop also gave the opportunity to early scholars in the field to network with leading experts as these early scholars and post-docs are actively seeking research and clinical posts right now! It’s important to provide these young scientists a chance to stay in the field!

    We need them.

   Several of the early scholars had received grants from rhabdo-coalition foundation partners. Summer’s Way and Friends of TJ have sponsored some of these early scholar grants. In addition to sessions led by experts in the field, Workshop participants, including foundation participants, got to hear updates from the work being done by early scholars like Dr. Patience Odeniyide, who is working on RAS-directed therapies for rhabdomyosarcoma, and Dr. Yun Claudia Wei, who is working on better understanding a particularly aggressive form of rhabdomyosarcoma, ssRMS with MYOD1. 

   Elevate had the opportunity to gather critical information from participants through a pre-workshop survey to gain insights into short and long-term best hope for developing new therapies as well as the challenges these experts face while trying to treat patients and develop new therapies. The answers to this survey led our foundations to lead a Saturday morning session on:

   Breaking down barriers to data access for those in the front lines of treating our kids AND for those trying to better understand the disease in their research work.

This “all hands on deck” discussion led to the creation of the…

   Rhabdo Coalition Data Access Task Force, which will begin work in January of 2024! The Task Force will be identifying the most critical questions that need to be answered so that we can collaboratively find solutions to get this prioritized information in the hands of those who need it mostThis will…

>Help decision-makers: better stratify risk categories for those diagnosed with rhabdomyosarcoma

>Help provide better data to clinicians in treating hospitals so they can go beyond their set of data in their own hospital to gain up to date info on best treatment options for patients,

AND

>Help researchers access critical information they need to assess matches for possible new therapies! 

 

   Elevate will also be participating in the second initiative coming out of the workshop: a Therapy Prioritization Task Force!

   This group will be determining the most promising options for new therapies, as a group, and then determining the best ways to get them brought forward through clinical trials. While this group is working on a start date, the Rhabdo Coalition members are already meeting collectively with industry partners in biotech and pharma to better understand how we can help overcome what has been dubbed “the valley of death”, which is the land between academic research and clinical trials. Gaining an improved understanding will help us tackle the problem head-on. The third goal coming out of the workshop is to help establish better access to needed tissue samples, cell lines and PDX (patient derived xenograft) models so that researchers can adequately test new compounds against various types of rhabdomyosarcoma. This task will be left to foundations, like Elevate, and other members of the coalition.

Our newly forming Elevate Rhabdo Workgroup will be tackling this issue head-on in the coming year.

 All participants left the workshop armed with updated information, improved collaborations and a list of next steps for 2024!

 

Summers Way Foundation

Host of the Rhabdo Coalition Workshop

Rhabdomyosarcoma Cancer Research

A Foundation established to honor the memory of Summer Michelle Hammond, and her values.

The Rhabdo Coalition

We love joining forces with other non-profits, like those above, Summers Way Foundation, Focus on Rhabdo, Maddie’s Promise, Sebastian Strong and Friends of TJ that are all foundation members.

Elevate also wants to connect with other foundations, experts, and families to collaborate. Join us! Send us a message. We want your help too!

ELEVATE at the FDA

  "      "Making more drugs available to kids with cancer means solving a million small problems. Yesterday’s event provided a necessary opportunity to bring more and more of those problems to light. If we can identify the problems, name the problems, then we can...

Tatum and Maisie Moving Mountains

"The challenges of being a pediatric cancer family are innumerable. Every time you think you’ve found the worst thing, something else rears its ugly head. These past few weeks we’ve witnessed a hefty serving of that humanity, led by two young girls, Tatum Pillor and...

Outwork the Noise

Don’t listen to those voices. Let your hard work, sweat and exertion drown out the noise.  Outwork the noise. -Justin Spoon Outwork the noise means something different for each of us. Robyn Spoon, Elevate Founder shares what this meant to Justin, and what it means to...

A Son, Brother, Collegiate Runner and Asbury Graduate Diagnosed with Rhabdomyosarcoma

"Today, you don't have to do something special. You don't have to do anything amazing or overwhelming. You just gotta get of bed and do something."    - Justin Spoon - A mother's share:     Sitting in a small Lexington, Kentucky clinic room with my then 21-year-old...

Ewings Sarcoma Mom Shares

"Her diagnosis story is probably best classified as ‘trust your gut and ask for the extra tests’."    - Aimee Formo, Ewings Sarcoma Survivor's mom & Childhood Cancer AdvocateGuest Blog by: Aimee Formo    Ewings sarcoma, also abbreviated EWS,  is an aggressive type...

Rhabdomyosarcoma: A Bereaved Mom Shares

Guest Blog by: Cindy Cleveland   Matt Cleveland 2/5/1997-3/8/2023  "From the time Matthew was little, he could most frequently be found playing baseball," Matthew's mom Cindy shares with Elevate.   "His love for the game started with T-Ball at the age of 4, continued...

First Look: Parents Share How They First Discovered Their Child Had Rhabdomyosarcoma

"A small, relatively painless lump near his left nostril had a name- Rhabdomyosarcoma"    - Robyn Spoon, Elevate CEO & Founder    "Rhabdomyosarcoma is rare, with only about 500 total diagnoses in the US each year and only a small percentage of those above the age...

Multi-Stakeholder Engagement for Wilms Tumor that Puts Children in the Center

“Organizing ideas for presentation is one of the best ways to learn. What we learn we can teach. I learned a new concept through working on the poster—design thinking. And learning about this subject was the beginning of teaching it in our role as advocates, a...

Elevate Wilms at the 12th International Pediatric Renal Tumors Biology Meeting

"Five years ago I was sitting across from the oncologists, today, I sit with them."    - C. Comer MTS, BSN, RN,Mike Ortiz, MD and Robyn Spoon, Elevate CEO       Great things that happened in New York to make a difference for Wilms tumor. Elevate Wilms...

Change Starts From the Ground Up

"Elevate provides a space to work towards solutions and a platform to make effective change."    - C. Comer MTS, BSN, RN,Guest Blog by: C. Comer MTS, BSN, RN       In the past, people with a common cause may have had coffee. Today, they zoom or form social media...

@2023 ELEVATE Childhood Cancer Research
and Advocacy, Inc.
is a registered 501(c)(3) non-profit organization.
EIN: 93-2185372

Join us! Stay up to date with our work and mission.

14 + 1 =

Please help keep our site secure and solve this problem.

We respect your privacy and will never sell or share your information.