Tuesday, May 20, 2014

Great Steps for NF

On April 18, we participated in the 2nd annual Great Steps for NF walk in Boardman Park. While this walk is smaller than the one in Pittsburgh, it means a little more to us. :) This year, we were interviewed by a reporter from the Vindicator. Thanks to everyone's generosity, we raised over $300 this year towards NF research!

Eric and I
Erin and I
Eric and Alvin

The Easter Bunny and me
Emma and Emali goofing off

Monday, May 19, 2014

NF Walk in the Wild

On May 3rd, we went to the Pittsburgh Zoo to participate in the 20th annual Walk in the Wild for NF. There we met up with a family that until that day, I'd only known online. So, this year, team Alvin's Allies was HUGE!

Anna, Alvin, and Kaleb
Alvin and Erin
Team Alvin's Allies (Minus Em and Emma)

Thank you so much to my cousin, Melissa, her daughter, Tamarra, and the Bowser family for joining us this year. It was a great walk and we had so much fun. Hope to see you all again next year!

Sunday, May 18, 2014

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?

Saturday, May 17, 2014

World NF Awareness Day!

Number 10: NF affects one in every 3,000 children born, more than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined (learn more).
Number 9: It only takes 8 to 10 letters from you and your friends to your congressperson for them to start noticing that NF is a very REAL issue (learn more).
Number 8: NF research is shedding new light on cancer, learning disabilities, and bone abnormalities - benefiting people beyond the NF community (learn more).
Number 7: CTF was recently awarded our second straight 4-star (highest) rating by Charity Navigator – America's largest independent charity evaluator! (learn more).
Number 6: The NF Clinic Network now has 44 recognized centers throughout the country and saw 10,000 patients last year (learn more).
Number 5: NASCAR star Kenny Wallace drove the Racing4Research #4 car at the 2011 Rolex 24 Hours at Daytona raising funds and awareness for NF! (learn more)
Number 4: The Children’s Tumor Foundation has tested 50 drugs for the manifestations of NF, each one moving us closer to treatments and a cure (learn more).
Number 3: In 2010 more than 1,500 Runners in NF Endurance Singlets crossed finish lines in 50 races nationwide for the NF Endurance Team (learn more).
Number 2: There are three forms of neurofibromatosis, NF1, NF2, and schwannomatosis, each cause tumors to grow on nerve endings in or on the body (learn more).
And the Number 1 thing to be Aware of on NF Awareness Day… NF is real. People who live with NF overcome incredible obstacles and you can do something about it  Visit www.ctf.orghttp://www.ctf.org/ and join our cause.
So, for today, when you get dressed, WEAR BLUE! Wear blue for my son. Wear blue for Kyle, Travis, AJ, Liam, Brian, and so so many others!

Friday, May 9, 2014

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*

Thursday, May 8, 2014

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*

Wednesday, May 7, 2014

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*

Tuesday, May 6, 2014

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*

Saturday, May 3, 2014

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.*

Friday, May 2, 2014

NF Awareness Month: Meet Kyle!

Kyle is 5, but was diagnosed at 6 months old with NF1. He has a number of CAL spots, but they are all hidden by his clothes. He also has a few fibromas on his right foot, but they don't bother him at all, so they are just monitored to make sure they don't get any bigger or cause him pain. Kyle's right leg is bowed, and was at birth, so when he turned 1, he started wearing a clam-shell brace to protect his leg from breaking or fractures. The brace has become like a part of him, and he runs & plays with it with no problems. Kyle was also diagnosed with scoliosis about a year and a half ago. He wears a back brace to try and correct it, and also to keep it from getting worse. So far, the brace has helped him tremendously. Kyle has no known tumors, but he is monitored with yearly MRI's to make sure and to maintain. He doesn't have many of the physical characteristics of NF, but what Kyle does have are a lot of developmental delays. He has speech delays, social skills delays, and fine motor & gross motor delays. To help him with these, he receives speech, OT, & PT both through school and also through private therapists at Akron Children's & Salem Pediatric Speech Therapy. He has come a long way, but still has a bit to go to catch up to his peers. Overall, Kyle is a very happy, loving, and active boy who loves to swim, play with his cars and trucks, read, and watch his favorite show Mythbusters. NF doesn't define him at all; it's just what he has, not who he is.

*permission to share Kyle's story given by his mom, Jenn*

Thursday, May 1, 2014

May is NF (neurofibromatosis) Awareness Month

May is the recognized month for neurofibromatosis awareness. So just what -is- NF? Well?

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births).

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified. 

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children. (Source)

Our son, Alvin, was diagnosed with NF1 on February 9, 2011. Though, we had suspected he'd had it since a few week after his birth. Alvin's NF has caused speech delays, learning delays, gross and fine motor delays, growth delays, macrocephaly, and a host of other issues. (He's also diagnosed with childhood apraxia of speech, obsessive compulsive disorder, sensory processing disorder, autism, and has a retained atypical tonic neck reflex.) In 2010, it was discovered that he had 3 small gliomas (tumors) in his brain. They are monitored with MRIs for growth. So far, we've been lucky and they have not grown. There were officially attributed to NF after his official diagnosis. In 2012, Alvin was further diagnosed with a phenotype of NF called neurofibromatosis-noonan's (NF-NS). It means diagnostically he meets the criteria for both NF and NS, however he does not have heart involvement like a true case of NS. NF-NS is thought to be 1:50,000 cases of NF.

To learn more about NF, please visit:

NF, Inc
Children's Tumor Foundation

And follow along with Alvin's Allies (our NF team) to watch his story develop. :)