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ELEVATE at the FDA

by ElevateAdmin | October 25, 2024 | Advocacy, Elevate News, Federal, Get involved/Volunteer, Research, State | 0 Comments

" "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

by ElevateAdmin | September 11, 2024 | Elevate News, Fundraisers, Get involved/Volunteer | 0 Comments

"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

by ElevateAdmin | September 4, 2024 | Advocacy, Elevate News, Get involved/Volunteer | 0 Comments

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

by ElevateAdmin | July 23, 2024 | Advocacy, Elevate News, Rhabdo Workgroup | 0 Comments

"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

by ElevateAdmin | July 15, 2024 | Advocacy, Elevate News, Get involved/Volunteer | 0 Comments

"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

by ElevateAdmin | July 11, 2024 | Advocacy, Elevate News, Rhabdo Workgroup | 0 Comments

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

by ElevateAdmin | July 8, 2024 | Advocacy, Elevate Kids, Elevate News, Research, Rhabdo Workgroup | 0 Comments

"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

by ElevateAdmin | June 27, 2024 | Advocacy, Elevate News, Research, Wilms Workgroup | 0 Comments

“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

by ElevateAdmin | June 18, 2024 | Advocacy, Elevate News, Federal, Research, Wilms Workgroup | 0 Comments

"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

by ElevateAdmin | May 31, 2024 | Advocacy, Research, Wilms Workgroup | 0 Comments

"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...

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Elevate Highlights Newsletter January 2024