GettingUp.Org, Inc.

06/01/2026

https://music.apple.com/us/album/signal-without-a-name-6-beyond-the-static/1885811883?i=1885812002 Rare Disease Music available on every platform, 250 countries. My personal favorite is Signal Without A Name. There are hundreds of songs from 9 artists, blues, rock, country, post rock, pop, and more.

Shadow Dream (1-Clinical Light Diagnosis)

My Summer (2-Vacuum Room
→ Isolation)

Breaking Mirrors (3-Borrowed
Skin → Identity fracture)

In My Bed (4-Resist the Collapse)

Too Late (5.Event Horizon →
Existential brink).wav

Signal Without A Name (6-
Beyond the Static →
Transcendent acceptance)

NewMusic IndieMusic SpotifyArtist AppleMusic YouTubeMusic AmazonMusic MusicWithPurpose RareDiseaseAwareness SupportRareDisease BluesSoul AmericanaMusic AdultContemporary AISingerSongwriter NowStreaming ListenNow StreamingEverywhere IndependentArtist MusicCommunity HopeThroughMusic InvisibleIllness ChronicIllnessAwareness HealingThroughMusic Spotify
Romy AppleMusicPlaylist YouTube

05/16/2026

2026 Swing Into Spring Myositis Fundraiser What an incredible weekend for the GettingUp.Org 4th Annual Golf Tournament Fundraiser — “Swing Into Spring 2026” at beautiful Lakewood Oaks Country Club on April 26 & 27.

Together, we raised over $35,000 gross for neuromuscular research and the fight against Inclusion Body Myositis (IBM) and related neuromuscular diseases.

We had an outstanding group of sponsors, an amazing turnout, and a completely full course with 18 teams competing. Congratulations to Ferrellgas for taking 1st place in the tournament — although in truth, everyone involved was a winner this weekend.

The weather turned out absolutely perfect, even after tornado sirens were sounding the night before around the course. Sometimes things just come together.

A huge thank you to Fun House Pizza — Jim & Nick — your pizza was a massive hit with everyone. From hot dogs fresh off the grill delivered to golfers on the course, to Bloody Marys and coffee to start the morning, to a wonderful dinner at The Argyle the evening before, the entire event was filled with friendship, laughter, generosity, and purpose.

Most importantly — thank you to every golfer, sponsor, volunteer, donor, and supporter who helped make this event such a success.

Because of you, we continue moving forward with hope, awareness, advocacy, and research.

SwingIntoSpring RareDiseaseAwareness NeverGiveUpNeverSurrender

05/16/2026

What an incredible weekend for the GettingUp.Org 4th Annual Golf Tournament Fundraiser — “Swing Into Spring 2026” at beautiful Lakewood Oaks Country Club on April 26 & 27.

Together, we raised over $35,000 gross for neuromuscular research and the fight against Inclusion Body Myositis (IBM) and related neuromuscular diseases.

We had an outstanding group of sponsors, an amazing turnout, and a completely full course with 18 teams competing. Congratulations to Ferrellgas for taking 1st place in the tournament — although in truth, everyone involved was a winner this weekend.

The weather turned out absolutely perfect, even after tornado sirens were sounding the night before around the course. Sometimes things just come together.

A huge thank you to Fun House Pizza — Jim & Nick — your pizza was a massive hit with everyone. From hot dogs fresh off the grill delivered to golfers on the course, to Bloody Marys and coffee to start the morning, to a wonderful dinner at The Argyle the evening before, the entire event was filled with friendship, laughter, generosity, and purpose.

Most importantly — thank you to every golfer, sponsor, volunteer, donor, and supporter who helped make this event such a success.

Because of you, we continue moving forward with hope, awareness, advocacy, and research.

05/10/2026

04/30/2026

Thank you for your many years of continued support helping fund Rare disease research with GettingUp.Org, Inc.

04/28/2026

https://open.spotify.com/artist/3iHXLjnuMa5izWVOj0Gs3P?si=FxArOuWhR4ecovpYIlzmPg

04/28/2026

https://www.gettingup.org/music-streaming Every steam helps people with rare diseases

04/12/2026

Remembering 2025 tee off fore treatment, 2026 swing into spring is only a couple weeks away. Thank you everybody for your continued support.

04/04/2026

New Music for Rare Disease Community

03/21/2026

Rare Disease Anachronisms

An anachronism is something out of its proper time.

Living with Inclusion Body Myositis feels like that.

My mind, my drive, my purpose — all present, all strong.
But my muscles don’t follow the same timeline.

It’s a strange disconnect… like parts of you belong to different eras.

But there’s another side to this.

While my body may lag behind, my thinking, my curiosity, and my mission are pushing ahead — toward better answers, better treatments, and a better future for rare disease patients.

Maybe anachronism isn’t just about being out of place.

Maybe it’s about being out of sync — in a way that forces change.