SLK Foundation

11/12/2024

It is with deep sadness that we share that our Mighty Milo lost his battle with TSD on Nov 3rd. Our thoughts and prayers are with Milo's amazing mom and family that were always surrounding Milo with love and celebrating him in many ways. Kids with rare diseases lives are often cut short, yet they leave such an amazing impact on those around them. Fly high Milo.

10/05/2024

Rare diseases, affecting less than 200,000 people in the US, pose significant challenges:

1. Fewer resources allocated due to small patient populations.

2. Insufficient patient data hinders understanding of disease mechanisms.

3. Small patient pools complicate clinical trial recruitment.

4. Pharmaceutical companies face reduced profit potential.

5. Many rare diseases have intricate, poorly understood biological pathways.

These factors hinder the development of effective treatments, leaving patients and families seeking answers. Increased awareness, collaboration, and innovative funding models are essential to tackling these elusive cures.

A Disease MAY be RARE but HOPE should NOT be!

10/04/2024

RARE fact - Genetic origin: 80% of rare diseases are genetic, while 20% are non-genetic.



Shine a Light on Rare Diseases and Genetics

Did you know that 1 in 10 people worldwide live with a rare disease? Rare diseases, often genetic in origin, affect over 300 million people globally.

Rare diseases are conditions that affect fewer than 1 in 2,000 people. They can be caused by genetic changes, infections, or environmental factors.

Genetics play a significant role in rare diseases, with 80% having a genetic component. Advances in genetic testing and research help diagnose and treat these conditions.

Join us in supporting those affected by rare diseases. Share your story or someone you know who's fighting a rare disease.

- National Organization for Rare Disorders (NORD)
- Genetic Alliance
- Rare Diseases Europe (EURORDIS)

05/17/2024

05/07/2024

In the United States, a disease is considered rare if it is affects fewer than 200,000 Americans. Some countries and the European Union have similar but slightly different definitions.

Do you know someone Rare?

A Disease may be rare but hope should not be! 💜

05/06/2024

Yesterday we had the opportunity to meet someone diagnosed with Williams syndrome. A genetic disease that I had not previously heard of or have crossed paths with. And the meeting was nothing short of amazing and this young lady was full of life and enjoyed every moment of it!

Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. WS occurs equally in males and females and in all cultures worldwide. To learn more about Williams syndrome, please visit the association page @ https://www.williams-syndrome.org/what-is-ws.

Have a great day and remember to raise awareness for !

A Disease May be Rare but Hope should not Be!

05/05/2024

Greetings family, friends, and followers. The SLK Foundation has been on a short break as busy schedules and different circumstances have presented themselves over the last many months.

As many of you may know, our President Steve Trott’s youngest daughter Veronica has been diagnosed with a very rare genetic disease. His family’s schedule and time has been quite difficult for much of the last 18 months. With that said, he wanted to share a heartfelt and sincere apology for the low volume of activities and planning for the SLK Foundation. He also, is extremely grateful for all of the support that has been given and shared with them.

The SLK Foundation will very soon be back to doing what we set out to do. We are working on details for a fall event that will bring you all much fun and a rewarding opportunity to support children with rare diseases.

Our will also remain front and center as we get back to doing what we love to support them.

Also, we like to remind everyone that this month is MPS awareness month and that international MPS awareness day falls on May 15th.

To continue showing your support for SLK and MPS, please remember to wear your purple!

Thank you everyone, please follow along with us to learn more about SLK and our !