Re-meet Terry

A few months ago, I introduced you to a wounded vet named Terry who was going to be running the Ironman for CTF. Well, he finished the Ironman in a time of 16:45:56. Very impressive! In total, Terry raised over $5,000 for CTF. Way to go Terry!!

Terry on the 112 mile bike ride.

Terry during the 26.2 mile walk/run.

Terry crossing the finish line!! Terry is definitely Alvin's hero. Alvin was tracking him online (with me) as the day went on.

Thank you Terry for all the awareness you've raised for NF. I'm glad there are people out there not personally affected that recognize the need for awareness for this disorder. You rock, Terry. You really rock.

*All photos are courtesy of Terry's Facebook page.

NF Awareness: Meet Terry

Unlike the others I've introduced to you, Terry does NOT have NF. He is a wounded veteran who is now part of the NF Endurance Team. He was seriously wounded in Afghanistan in July 2010.

Click on the pic to be taken to Terry's FB Page. If you like it, let him know Alvin's Allies sent you. :)

When Terry was in high school, his Grandma passed away from breast cancer. He knew that breast cancer was a widely known disease, but he thought he could make a difference for people who's diseases aren't widely known. During his search for a cause, Children's Tumor Foundation came up.

In August 2014, Terry will be running in the Ironman North American Championship in Mont-Tremblant, Quebec, Canada. He will be doing a a 2.4-mile swim, 112-mile bike ride and a 26.2-mile walk! (He cannot run due to his injuries sustained in Afghanistan.) In this race, he will run for an NF child named, Grace. Like Alvin, Grace has NF and has had issues since she was a baby.

The following is a video from Terry himself explaining much more eloquently who he is, why he's doing this, etc. So, please watch the video!


Now that you've made it this far, will you take a min and donate to Terry's NF Endurance Team fund?

NF Awareness: Meet Travis

This is Travis. Travis is yet another NF warrior. He is 6.

From Travis' Mom:  "He has a plexiform neurofibroma that extends over 50% of his body length (from the nerve roots at the base of his spine, in/around his left hip, surrounding his left thigh, and down to the bottom of his left tibia). He is a resilient kid that brings a smile wherever he goes. His older brothers are avid hockey players and love most any sport."

You can follow Travis' Journey through his blog.

*Permission to share his story given by his mom, Kelly*

NF Awareness: Meet AJ

Today, I'd like you to meet AJ. AJ is 5 years old. On January 30th, 2014, he was diagnosed with 2 optic gliomas. You can follow his story more closely at Prayers for AJ on Facebook. Tell them Alvin's Allies sent you!


*Shared with permission of AJ's mom, Mere*

NF Awareness: Meet Liam!

This little guy is named Liam. Tough Liam, to be exact. At least, that's what his mom calls him!

From Liam's Mom:" Liam was born at 33 weeks. Liam has BPD , Seizures, Asthma, Neurifibromatosis, brain tumors and optic nerve tumors' speech and language delays as well as learning. Liam is now two years old and has shown us what a true fighter really is. Liam takes several medications daily."


You can follow Tough Liam on his Facebook page. If you do, tell them either Wild Rice or Alvin's Allies sent you!


*Permission to share Liam's story given by his mom, Dorothy*

NF Awareness: Meet Brian!

Hey there. Here's another little NF warrior I'd like you to meet. His name is Brian!

From Brian's Mom: Back in 2011 we went for a normal routine check up with his pediatrician. She noticed that he had a bunch of CAL spots all over his body & proceeded to tell me that she thinks that he has Neurofibromatosis. She only knew of this because she had 3 other patients with this. She suggested that we see a neurologist at The Cleveland Clinic. From that point on we went on to see a ophthalmologist & genetics. After we saw our doctor in genetics it was clear that Brian had a spontaneous mutation of mosaic NF1 along with other deletions around the NF1 gene in which we are going on the 6th to talk to genetics about. Even though his NF isn't severe like others he does have some speech problems that he has seen a speech therapist for at his preschool. Going into KG is going to make me nervous knowing that learning can be a challenge at times, but I do believe he will do GREAT!!! Brian is a VERY outgoing 5 year old boy that is also very inquisitive. He loves to help as well as working out with mom & dad. He loves playing outside & bothering his sister. He has a big heart and he's very loving. NF doesn't define him or our family. It's a challenge that we face on a day to day basis, but it won't hold any of us back."

*Brian's story posted with permission of his mother, Amanda*

NF Awareness Month: Meet Sebastian

This little cutie is named Sebastian. He is a NF Warrior I'd like you to meet.

Sebastian's Mom: "Sebastian is now 3 years old. He was diagnosed as an infant with NF1. An MRI before he turned 2 showed OG but not significant enough for any needed treatment. A year later, 3 weeks before his 3rd birthday, his annual MRI showed a significant increase in the tumors and was causing vision changes. We began chemo treatment just one week later. That was July 2013 and Sebastian does weekly chemo and is scheduled to continue through this treatment through September. As a result of the chemo, Sebastian suffers from debilitating neuropathy in his legs and feet. These side effects are very intense and cause him great anxiety. Sebastian is such a sweet boy, he is constantly hugging and kissing and saying "I love you," even during chemo he will chose items from a treasure box for his sister and not himself. I am so proud of my Super Sebastian!"

 You can learn more about Sebastian and his journey by following his page on Facebook: Sebastian's Sweethearts.

If you do follow Sebastian, let them know either Wild Rice or Alvin's Allies sent you! The more we can get out about NF, the better!

*information shared with permission of Sebastian's mom, Amie.*