Saddiq Akilu, A Young Man from Nigeria Looking for a Hand Up

We are approaching five weeks away from hosting Chondrosarcoma Awareness Day on February 6 (Shayna’s heavenly 33rd birthday). This is our international effort to educate the public about this rare bone cancer and to build a coalition to support more research and clinical trials. The more attention we create, the more support we generate.

Here is all we ask:
We ask that you join us in wearing Yellow and post pictures wearing Yellow on social media platforms using the hashtag: #cswecare #chondrosarcoma #chondrosarcomafoundation We also ask that you reach out and educate your family, friends and co-workers about chondrosarcoma, help them understand that we need to bring awareness to fight this deadly beast and encourage them to join us by simply going to our website to add their name and email address to our petition:

In addition, we use Chondrosarcoma Awareness Day: February 6, to share stories of our community / our family who provide us with inspiration. Each week before February 6, we share a new story about a member of our community. Some of our members lost their battle with Chondrosarcoma, others are surviving, leading productive lives with the help of surgery, radiation, orphan medications and clinical trials. This past Tuesday we paid tribute to Pete Musto. Pete was an electrical engineer, worked on he Space Shuttle and a father of a family of five children. Pete lost his battle from conventional chondrosarcoma grade 2/3 which originated in his larynx last March. He is survived by his wife Jennifer, who remains active in our foundation honoring Pete’s legacy as well as their five children.

Today, we are sharing the story of Saddiq Akilu. He is from Nigeria, a part of the world that has no clue how to diagnose or treat chondrosarcoma. Saddiq worked his way through school to become a medical laboratory technician and after graduation from the University discovered he had Conventional Chondrosarcoma Grade 2. He has had two surgeries and now requires post-surgical treatment (proton radiation or a clinical trial). Saddiq is looking for a hand-up as he is trying to raise money and obtain support to go to Europe to participate in a clinical trial.

Please take a few minutes to read our tribute honoring Saddiq Akilu’s fight.

Saddiq Akilu Story.pdf