The Aarskog Foundation

11/10/2025

Would you like to donate?

29/09/2025

Hi everyone! 🌟 You can support The Aarskog Foundation by sending Stars – they help raise money. Only thing we need now is content, that you will love.

Whenever you see the Stars icon, you can send in Stars.

29/09/2025

29/09/2025

Sometimes you just want an easy way to explain to teachers or your family about your child’s sensory challenges.

There are 7 sensory systems included in this printable packet:
- Tactile
- Auditory
- Visual
- Gustatory
- Olfactory
- Proprioception
- Vestibular

>>> http://www.thesensoryspectrum.com/sensory-system-printable-handout-guides/

We adore sharing helpful resources! We may also get a cut of any products you purchase through this site that help us run this page 24 hours a day.

18/05/2025

Steve Backshall, this little one!


That’s probably 🙏🏽

06/06/2024

Ondria Miller 👀

𝐈𝐧𝐯𝐢𝐭𝐚𝐭𝐢𝐨𝐧: 𝐔𝐧𝐝𝐞𝐫𝐬𝐭𝐚𝐧𝐝𝐢𝐧𝐠 𝐈𝐦𝐩𝐚𝐜𝐭 𝐀𝐜𝐫𝐨𝐬𝐬 𝐭𝐡𝐞 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐒𝐞𝐜𝐭𝐨𝐫

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to monitoring the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan is the first nationally coordinated effort to address rare diseases in Australia. 📝

As part of this ongoing work, RVA is seeking expressions of interest (EOI) from a range of rare disease stakeholders willing to take part in an online interview to share stories of change on behalf of their community, group/organisation, practice or institution.

📩 Learn more and lodge your EOI on RVA's website: https://rarevoices.org.au/understanding-impact-rare-disease-sector/

30/01/2024

Have you seen the news of the for research project? This first of its kind research will look at the accessibility of health-related wearables (such as a smart watch and jewelry) for persons with IDD to take charge of their health outcomes.

This project stands out because each participant gets choose the wearable that works best for them based on their identified health goals using the self-directed learning model.

If you are interested, contact Kacey Ward at [email protected], (405) 744-9960.

https://www.facebook.com/100064329053806/posts/795390435948584/?

We’re excited to announce the kickoff of the for research project! This first of its kind research will look at the accessibility of health-related wearables (such as a smart watch and jewelry) for persons with IDD to take charge of their health outcomes.

This project stands out because each participant gets choose the wearable that works best for them based on their identified health goals using the self-directed learning model.

If you are interested, contact Kacey Ward at [email protected], (405) 744-9960.

24/09/2023

Genome editing (also called gene editing) is a group of technologies that give scientists the ability to change an organism's DNA. These technologies allow genetic material to be added, removed, or altered at particular locations in the genome

In 2022 I was invited to join 20 other people with lived experiences to be a member of a “Citizens Jury” with Welcome Connecting Science, on Genomic Engineering of the Human Embryos.

Watch the video and tell me what you think about editing, to edit, or not edit?

https://www.wellcomeconnectingscience.org/news_item/citizens-jury-votes-for-government-to-begin-serious-discussion-about-potentially-changing-the-law-on-editing-human-embryos/ #:~:text=The%20jury%20voted%20in%20favour,views%20on%20this%20complex%20topic.

The jurors voted that the UK government should consider changing the law, albeit with strong recommendations on how the process should be handled.

17/05/2023

I am not my diagnosis, that I spent years trying to find.
I am not the burden, that I wish I could leave behind.
I am not the pain, that comes and goes like the dancing breeze.
I am not weakness in my hips, wrists and knees.
I am not the frustration, that I feel with every deep sigh. I am not the exhaustion, that pulls me down when I want to soar high.
I am not the tightness that I feel when breathing in, I am trying to fight, and the rope I balance on is thin.
I am not failure when the day is to hard to bare, I am not as fragile as the tissue that lives under there.
I am not excuses, or labels and reasons why not. I am defiant and brave and I won’t fade and rot.
I am a zebra dancing with horses in a world not built for my fragility, I am fierce and determined and my disease won’t stop my ability.
I am strong. I choose life. I choose to fly despite my fragile wings. I am not my diagnosis and all that it brings.
- Lara Bloom

22/04/2023

https://www.eventbrite.com/e/forgotten-unseen-a-global-perspective-on-life-as-an-x-linked-carrier-tickets-602449411407

Join IndoUSrare, Remember The Girls, and Child & Youth Care Zimbabwe in a panel discussion on invisible X-linked carriers.

22/04/2023