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.

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

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!

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?

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!

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.*

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*

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. :)

Great Steps Walk for NF

I know I haven't been much into blogging this past year. I am sorry for that. Things will pick up again in May. Why? May is NF awareness month!!

So, time for some shameless plugging for my fundraiser for the NF walk we're doing THIS Saturday! (April 19th).  Anything you can donate is amazing. If you can't donate, can you share the link? All funds go DIRECTLY to NF, Inc, a registered non-profit.

Click Here to go to Alvin's Allies fundraiser page!

NFCA Walk in the Wild 2013

Today was the 19th Annual Walk in the Wild for NF at the Pittsburgh Zoo. This was our second year doing this walk. Last year it was rainy and miserable. This year it was GORGEOUS weather for it. We also had custom team shirts printed this year.

Great Steps for NF walk

Today was the Great Steps for NF walk. It was the First Annual walk for this area. (There is a bigger walk in Pittsburgh. This one is MUCH closer and supports NF, Inc.). One of my FB friends was the head volunteer! While it was a small walk, it was still a great walk! Sadly, it was COLD! It actually was snowing while we were walking. Funny, because it was 84 two days ago. Oh well, such is the weather in April in Ohio.

My Giant Face Tumor

Well, I'm sure that title got your attention. As most of the people that read this know, my son has neurofibromatosis. NF is a nerve disorder that causes unchecked growth of nerve cells, which form tumors anywhere a nerve is present.

Tonight, TLC (The Learning Channel) is airing a documentary called "My Giant Face Tumor" at 9pm EDT. It follows two people with NF. One of them is a man named Ed Port who is local to my area. He's a truly great man and an inspiration to all those who have NF.

So, please, take an hour out of your day, and watch the documentary so you too can learn more about neurofibromatosis.

To follow Ed's journey with NF, please like his Facebook page, or follow his blog. Thanks!

31 Days of Awareness: NF Awareness

Neurofibromatosis

Awareness Color: Blue or green (opinions vary.)

Awareness Month: May

Awareness Day: May 17th

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).  The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

31 Days of ...

Like many others in the blogging world, I'm joining The Nester in the "31 Days of ..." blogging challenge. The challenge is to pick a topic, any topic, and stick to that topic every day for the month of October. You can find my link, as well as hundreds of others at: 31 Dayers 2012.

So, what's my chosen topic? Awareness. Yep. Not just NF awareness. 31 days of different things that need awareness. Every day I will blog about a different disease, disorder, plight, etc. This post will contain the link to every post as I do them. I know I don't have a large following, but I do have a few people following that I don't personally know. Who knows? Maybe this will kickstart people into following this tiny little blog of mine. Do you have something you want to spread awareness about? Comment or email me!

I promise that I'll continue to blog about what I normally blog out too. My life mostly, though I know it can be boring at times. So, look out, because there may be several posts in a day!

31 Days of Awareness

Day   1: Neurofibromatosis Awareness
Day   2: Apraxia Awareness
Day   3: Plagiocephaly/Brachycephaly Awareness
Day   4: Trigeminal Neuralgia Awareness
Day   5: Autism Awareness
Day   6: Microcephaly Awareness
Day   7: Dubowitz Syndrome Awareness
Day   8: Lupus Awareness
Day   9: Epidermolysis Bullosa
Day 10: Fibromyalgia
Day 11: Visual Impairments
Day 12: Ehlers-Danlos Syndrome
Day 13: Mental Health Awareness
Day 14: Diabetes Awareness
Day 15: Infertility Awareness
Day 16: Hirschsprung's Disease Awareness
Day 17: Eating Disorder Awareness
Day 18: PCOS Awareness
Day 19: Interstitial Cystitis
Day 20: PTSD Awareness
Day 21: Heart Disease Awareness
Day 22: Breast Cancer Awareness
Day 23: Bullying Awareness
Day 24: Cerebral Palsy Awareness
Day 25: POTS Awareness
Day 26: Cystic Fibrosis Awareness
Day 27: "R" word Awareness
Day 28: Trisomy 18 Awareness
Day 29: Down Syndrome Awareness
Day 30: Birth Parents Awareness
Day 31: Zombie Awareness

We MUST find a cure!

RIP Dawson.

Tonight, Dawson's brave, but short, journey with brain cancer  (due to neurofibromatosis) has ended. He was 13 years old, and passed peacefully at home surrounded by his family. He took his last breaths in his mother's arms. His mother posted this status:

At 7:37pm Heaven gained the most beautiful, strong, brave, and inspirational angel I know. He was surrounded by his family and in my arms when he took his last breath. Fly high baby boy, fly high. Mommy loves you and always will. You will forever be apart of me. I will see you soon. I bet there is one hell of a celebration going on in heaven right now as you are saying all of his hellos.

This is why finding a cure for neurofibromatosis is so important. So other mothers, fathers, sisters, brothers, aunts, uncles, etc don't have to feel the pain and loss that Dawson's mother is feeling tonight. 

Dawson

A few months ago, I introduced you to a boy named Dawson who has NF1 and a level 4 Glioblastma Multiforme (GBM). He was diagnosed in December 2011. Prognosis was 5 years max. Sadly, he's been given only weeks left. Updates on him are being given every day for the final legs of his journey. Please, feel free to join this group on Facebook and let Dawson know just how far reaching his story really is. Let 13 year old Dawson know that there are people out there who will continue the fight to find a cure for NF. Dawson, you are NOT alone.

Dawson's Bucket List