Next Generation of Cystinosis

06/23/2026

Art credit ~ chronicallynikki

06/22/2026

Art credit ~ dear_chronic_pain

06/20/2026

Supporting people with cystinosis means more to Next Generation of Cystinosis than offering medical resources and talking treatment.

We support every human living with this rare disease amd their unique joys and challenges as whole people. This includes sexuality and gender identity that makes them who they are as well as create additional barriers in navigating the healthcare system.



[ID: American Association of People with Disabilities created the graphic below for June. It has the Pride flag with Trans colors and racial diversity colors. Below the flag is the following statement:

" Happy Pride Month! Disabled people are almost twice as likely to be q***r as non-disabled people."]

06/19/2026

06/19/2026

Our late peer Kevin McCalla brought to our attention 7 yrs ago the Texas holiday of . It has been a federally recognized holiday the last 5 years.

A few years ago, found this really neat children's book to teach kids about Juneteenth in the rhyming format of Twas the Night Before Christmas!

It includes excellent information in the Afterword for all.

Next Generation of Cystinosis celebrates the freedom of all humans.

[ID: cover for The Night Before Freedom a Juneteenth Story by Glenda Armand and pictures by Cory Barksdale. People of Color are dancing on the front cover. The Afterword reads:

"On September 22, 1862, in the midst of the Civil War, President Abraham Lincoln signed a preliminary Emancipation Proclamation. It declared that if the Southern states did not cease their rebellion by January 1, 1863, all enslaved persons within the rebellious states would 'be then, thenceforward, and forever free.' When the Southern states continued their rebellion, President Lincoln issued the Emancipation Proclamation, effective New Year's Day, 1863.

However, people in Texas did not receive the news of their emancipation until two and a half years later. On June 19, 1865, Major General Gordon Granger arrived in Galveston, Texas, and read General Order No. 3: 'The people of Texas are informed that, in accordance with a proclamation from the Executive of the United States, all slaves are free. This involves an absolute equality of personal rights and rights of property between former masters and slaves, and the connection heretofore existing between them becomes that between employer and hired labor.'

Six months later, all enslaved persons in the United States were emancipated with the adoption of the Thirteenth Amendment to the United States Constitution on December 6, 1865. Nevertheless, June 19, 1865, the date the news of freedom arrived in Texas, has been celebrated for years in many states to commemorate the end of slavery. In 1979, Juneteenth (June 19) became a state holiday in Texas. On June 17, 2021, President Joe Biden signed a law making Juneteenth a federal holiday.

The Night Before Freedom is also a tribute to The Night Before Christmas by Clement C. Moore. In addition to having borrowed some words and images, I wrote The Night Before Freedom in the same meter as the classic poem: anapestic tetrameter. That is a mouthful! It simply means that the pattern, or meter, of the poem goes like this: da da DUM da da DUM da da DUM da da DUM. For young Bess, I think that looking forward to freedom was much like the anticipation many children feel when they are waiting for a special day like Christmas."]

06/17/2026

My best isn’t the same every day 🥄💜

Art credit ~ thepotslife_

06/16/2026

My chronic illness is unpredictable

06/11/2026

I am a mashed potato, the mashed potato is me.

06/11/2026

It’s not emotional distance, it’s energy depletion.

Art by ~ begonepots