P.O. Box 8524, Port St. Lucie, Florida 34952 help@cherab.org 772-335-5135

From Our Blog

Pursuit of Research Promoting Good Nutrition For Special Needs

  • How music lessons can improve language skills
    by Jolie Abreu on June 28, 2018 at 6:01 pm

    The power of sound, a therapy worth listening to I’ve shared a few times how my son Tanner Geng has developed an ecliptic love for music in the past few years, where outside of school he listens to music most times while doing homework, hanging out, or even all night long while sleeping.  But when...Read More » […]

  • Keep Calm And Carry On For Better Behaved Kids
    by Jolie Abreu on June 1, 2018 at 2:06 pm

    Study has implications for reducing harsh verbal parenting and poor child behavior.  Even though this study did not go into hereditary influence or influence from interaction; nature or nurture, or focus on the father, there are implications that the greater emotional control and problem-solving abilities a mother has, the less likely her children will develop...Read More » […]

  • How To Teach A Child With Apraxia To Ride A Bike
    by Jolie Abreu on May 23, 2018 at 3:59 pm

    How do you teach a child with apraxia to ride a bike?  The same way to get to Carnegie Hall. practice, practice, practice (plus a few more tips below) Question: I am wondering if anyone has some ideas that would help me teach my almost 7-year-old, Jaeden, to ride a bike. He has moderate-severe verbal...Read More » […]

  • Oral Based Hearing Impaired Schools
    by Jolie Abreu on May 1, 2018 at 10:35 pm

    Because schools for the hearing impaired, and in particular oral based schools for the hearing impaired, have been an appropriate preschool placement for so many with apraxia, the following list is being shared which was available online through the Oberkotter Foundation to around 2014.  From this list my son Tanner attended preschool at the Summit Speech School...Read More » […]

  • Be Part Of The Late Talker Book Sequel
    by Jolie Abreu on April 26, 2018 at 5:33 pm

    I am Lisa Geng, mom of 2 boys that were both late talkers, Founder and President of the 501c3 Cherab Foundation, and coauthor of The Late Talker book.  I’m currently working with a team doing some research for a sequel book to The Late Talker and will be sending out a series of short surveys to...Read More » […]

Help Little Tadgh

A Mom’s Cry For Help For Her Son

GoFundMe

Most of us sit at our computers, on our phones, on our tablets, with our normal functioning fingers, hands, arms, elbows, shoulders and knees; tapping our functioning feet; sipping, chewing, swallowing whatever we want, never thinking twice about our chromosomal make-up.

For almost-3-year-old Tadgh Magee of Dublin, Ireland, none of this is his norm. His life has been one long discovery of new diagnosis, new symptoms, new surgeries and new setbacks. Tadgh is the only recorded person in the world to have the chromosomal disorder he has. The typical manner in which our bodies tadgh5function are mostly foreign him.

In addition to or as a result of being the only known child in the world with a duplication short arm of chromosome 7 at band 7p14.3, precious little Tadgh is trying hard to make it through each day best he can. He is plagued with various heart, lung, brain and congenital disorders, body deformities, speech and sensory problems, was diagnosed with autism and speech delays, has an inability to feel pain normally, and a host of other medical conditions. When he cries he is unable to say why. In his situation there are so many abnormalities that it could be anything.

Tadgh’s daily life has been spent in and out of hospitals but there is nothing conclusive. He is under the care of numerous specialists who don’t consult with one another but rather contradict each other leaving his mother, Melissa, to connect all the dots on her own. She has so many questions for which there are currently no answers.

Melissa is neither a medical doctor nor researcher, but her last three years have been spent seeking help for her son. “I’ve rang all around the world. I rang Canada, I rang England, I rang America, I rang the NIH,” she says. “I keep hitting dead ends. Talks with Ireland’s Minister of Health proved useless as well.”tadgh3

She visited the U.S. with Tadgh in February of this year so he could be fitted for a special T-Joe Brace to correct his chest deformity. While here she contacted the Children’s Hospital of Philadelphia to inquire about additional testing. She was told the initial cost would be $60,000 plus additional fees for admittance. “I just don’t have that kind of money,” she said.

Through Cherab, Lisa Geng is assembling a team of medical specialists, doctors and therapists, in Florida, who are offering their services free of charge so the Magee family can delve deeper into this miraculous boy and hopefully come up with more answers. All we need to do is get them here!

“Despite all these diagnosis Tadgh is the most loving little man. He is so funny and coming on in leaps and bounds. Unfortunately he keeps getting new diagnosis and I don’t know what will happen in the near future. I know I won’t ever find a cure and have accepted that Tadgh is my beautiful rare unique miracle baby but I would hope to find somebody with a duplication at 7p14.3.” –Melissa Magee

People Trying To Help From Around The Globe

Melissa who lives in Ireland had shared the following cry for help on her personal Facebook page which has already been shared over 8 thousand time.  One of the parents that shared it was Trish Peck, a mom from China has a therapist for her son who is originally from Ireland who saw Melissa’s cry for help for her son Tadgh and shared it with Trish, who then shared the following on the Cherab support group on Facebook where Lisa Geng helped find professionals in Florida like Dr. Aylin Ozdemire, and Dr. Renai Jonas willing to donate their time to help  Also special thanks to writer/mom Nina Wolgelenter for writing up Tadgh’s story.

Professionals Helping To Donate Their Time To Help Tadgh In The US

  • Dr. Aylin Ozdemir (MD) “Dr. O”  Website  Jacksonville, Florida
  • Dr. Renai Jonas (CCC SLP)   Website  Boca Raton, Florida

If you are a medical professional that is interested in helping Tadgh anywhere in the world please contact us.

Melissa needs help getting to the US, the flight for their family alone will be around 2 thousand US dollars.  In addition any additional monies can go toward Tadgh’s medical fund.  Please help if you can.  Tadgh’s Gofundme account

Tadgh’s Facebook Pages

Main page

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Camden’s Birthday Party Brings Worldwide Awareness For Apraxia Which Started In a Cherab Support Group Message

Camden said the day after the party to his mom“Mama this has been the second best day of my life building Legos with you, my best day was yesterday.”

Camden’s birthday party has been the most awareness for apraxia in a few days than apraxia has had in over the past century!

It all started at the Cherab’s one support group on Facebook at apraxia.org when Camden’s mom shared to the group expressing her frustration about her son not having any friends to invite to his upcoming birthday party.   Lisa Geng who runs the group and is President of Cherab, and co author of The Late Talker suggested to the mom starting a page on Facebook that could be shared to get a few children there.

Thank you Facebook, original message shared at a Cherab support group

camdenspartystart

Traci started a Facebook page for Camden

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Thank you Reddit, and specifically r/uplifting news which is where Lisa Geng shared Camden’s birthday page

Lisa Geng immediately shared Camden’s Ultimate Water Balloon Birthday Party Invitation on Reddit where her post went to the front page of Reddit within hours.

reddit

Social Media helped give Camden the “Best Birthday Ever”

This short video from Newsy sums up the story!

National and International News

The following are just a few of the many news articles which cover Camden’s party and share awareness about apraxia at the same time.

‘Best birthday ever!’ Massive water-balloon fight rallies community for a cause

“Lisa Geng, president of the nonprofit Cherab Foundation, was excited to see the amount of people in support of Camden and the awareness they’ve raised for apraxia of speech. Her organization works to help kids with speech and language delays improve the way they communicate with others.

The Cherab Foundation helped spread the word about a little boy’s upcoming birthday party when his mother had originally worried that not enough people would be in attendance.

“I do hope Camden’s story not only shows the need to embrace those that are unique from others, share the beauty of human nature, but also that it may enlighten those parents of late-talking children about another condition— to confirm or rule out outside of autism or a hearing impairment when a child’s speech is not developing as it should,” Geng told TODAY.com.  Read more at Today

When No One Was Showing Up, the Internet Gave This 10-Year-Old the Best Birthday Ever

Eubank soon after posted her concerns on the Facebook page of the CHERAB foundation, a nonprofit speech disorder support group, where organization president Lisa Geng encouraged Eubank to reach out online and look for party guests outside of Camden’s normal circles.

Eubank’s original Facebook event went viral after it was posted to Reddit and attracted more than 5,000 likes by Tuesday afternoon, and the results were better than anybody could have expected.”  Read more at Mic.com

300 Strangers Show Up For Kid’s Epic Water Balloon Fight


by Katie Link, Christine Slusser
Newsy.com

“Camden is homeschooled because he has apraxia, which is a speech issue,” Camden’s father, Wayne Eubank, told WDBJ.

Apraxia is a disorder that causes people to have difficulty making accurate movements when speaking. Because of it, Camden said he felt isolated and had a hard time making friends — something his mom wanted to change.

Eubank at first reached out to a nonprofit support group for apraxia — The Cherab Foundation. A woman with the foundation suggested she share the news on Facebook; then, that same woman shared it on Reddit, where it went viral.

The post received thousands of likes and comments. Nearly 300 people showed up for the massive water balloon fight.”  Read more at Newsy

300 Strangers Show Up For Kid’s Epic Water Balloon Fight

Typical birthday parties include cake and, hopefully, some presents, too.

But what about a giant water balloon fight? That’s exactly what 10-year-old Camden Eubank from Roanoke, Virginia, wanted.

“Camden is homeschooled because he has apraxia, which is a speech issue,” Cameron’s father, Wayne Eubank, told WDBJ.

Apraxia is a disorder that causes people to have difficulty making accurate movements when speaking. Because of it, Camden said he felt isolated and had a hard time making friends — something his mom wanted to change.

Eubank at first reached out to a nonprofit support group for apraxia — The Cherab Foundation. A woman with the foundation suggested she share the news on Facebook; then, that same womanshared it on Reddit, where it went viral.

The post received thousands of likes and comments. Nearly 300 people showed up for the massive water balloon fight. Read more at ABC2news

Camden thanks President Obama

This is what President Obama sent Camden!

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Virginia Mom of Boy with Speech Disorder Uses Facebook to Invite Thousands to His Birthday Party: ‘He Has a Really Hard Time Making Friends’

For his 10th birthday, Camden Eubank of Roanoke, Virginia, asked his mom for a big water balloon fight. But his wish wasn’t so easy to grant because Camden has Apraxia, a speech disorder that makes it hard for him to make friends. Read more at People

Hundreds Of Strangers Show Up For Little Boy’s Birthday Party After Mom’s Heartfelt Plea

A Virginia boy’s birthday party invitation went viral and it showed just how many people know it’s OK to be different.  Read more at ABC11

This family didn’t think anyone would come to their son’s birthday party. They were very, very wrong

Camden, who is homeschooled, has a speech disorder called apraxia of speech, which limits his speaking abilities in social settings and makes it difficult for him to make friends, WDBJ7 reported. But thanks to the Internet, Camden now has friends aplenty. Read more at Desert News National

Roanoke boy’s birthday party goes viral, family feels “Reddit Hug”

Camden Eubank’s family wasn’t sure who would show up at the party, and said Camden has trouble making friends. Camden’s mom’s call for help online went viral, and about 300 people showed up, in addition to countless gifts sent from around the world thanks to popular online message board site Reddit.  Read more at WDBJ news

Hundreds attend party for ‘different’ Virginia boy who does not have a lot of friends

A 10-year-old Virginia boy had the birthday party of a lifetime over the weekend. Camden Eubank’s parents were initially concerned that not many people would show up to the water balloon fight party in Troutville. Camden, they said, is home schooled and does not have a lot of friends. He has a speech issue known as apraxia, his father said, which made making friends difficult for him. Read more at CBS 6

Why This Family Was So Overjoyed That Hundreds of Strangers Crashed Son’s Birthday Party

When a mom created an open invitation on Facebook last week to invite people to her son’s birthday party after being concerned that her son’s speech impediment and lack of friends would mean too few guests, little did she know the outpouring of goodwill it would generate. Read more at Good Morning America

Hundreds attend party for Va. boy with speech disorder

Camden, has Apraxia of speech which is a motor speech disorder. It means he has problems saying sounds, syllables and words because his brain has issues planning to move the body parts, such as the lips or tongue, needed for speech. Read more at MyFoxPhilly

Hundreds Show Up to Camden Eubank’s 10th Birthday Party

It all started with a mother’s Facebook post. She shared the story of her young son in need of friends for a small water balloon fight — Camden Eubank’s wish for his 10th birthday party. “I was just hoping a few Facebook friends would come and bring their kids”. Camden was born with Apraxia a condition that makes it difficult for him to speak and his mom says making friends hasn’t been easy. Read more at  ABC13 news

Mom Feared Her 10-Year-Old With Few Friends Would Have a Disappointing Birthday. The Internet Made Sure That Didn’t Happen in an Epic Way.

Her son, Camden, was turning 10 and wanted to have what she called the “ultimate water balloon fight party with 2,000 balloons and lots of kids.” The water balloons wouldn’t be a problem, but the kids, Eubank wrote, would. “The only problem is Camden has Apraxia of speech and because of the issues with articulation and some impulsiveness he has a really hard time making friends. We homeschool Camden because he would have a very hard time in a classroom setting, because he is hyperactive and as I mentioned above, impulsive. I also chose to homeschool him because I didn’t want the labels he would’ve gotten in a public school setting- those labels follow you the rest of your life,” Eubank’s post continued. The mom said her son usually plays with his older sister and her friend and, until recently, another boy in the neighborhood. This boy though, Eubank wrote, recently decided “he’s too cool to hang out with a ‘little kid that can’t talk right.’” Read more at The Blaze

Virginia boy’s birthday wish for new friends comes true thanks to Facebook, Reddit

Camden Eubank has apraxia of speech, coupled with hyperactivity and has trouble articulating words and saying sounds. Eubank’s parents decided that homeschooling was best for her son. With few friends and his speech issues, Camden’s mother went to Facebook to find a few people to help toss 2,000 water balloons. Read more at WPXInews

Hundreds turn up to celebrate Virginia boy’s birthday balloon bash

Camden has apraxia, a disorder that makes it difficult for him to talk to people, meaning Monday’s turn-out really meant a lot. One father drove from northern Virginia with his two sons to celebrate Camden’s birthday. “My oldest son Leon is a special needs child also and I know how difficult it is for him to make friends,” explained Ed Urbaniak. Read more at ABC8news

Roanoke boy’s birthday wish comes true

When Camden’s mother created the Facebook page “Camden’s 10th Birthday Party — An Open Invitation” last week, she thought she was planning a small get-together for her son, who has struggled to make friends because of a motor speech disorder. Camden lives with apraxia of speech, which hampers his ability to articulate words and say sounds. Read more at Roankenews

Boy’s Water Balloon Birthday Party Attracts Crowd of Hundreds

Camden was born with apraxia, a condition then makes it difficult for him to speak and mother says making friends hasn’t been easy. Watch video on ABC


ABC US News | World News

 300 Strangers Show Up For Kid’s Epic Water Balloon Fight

Boy’s water balloon birthday party goes viral

It’s a birthday party kids can only dream of. Camden Eubank turned ten Monday and these people, many of them strangers, are here for him. “Camden is homeschooled because he has Apraxia which is a speech issue.” Camden doesn’t have many friends, and his family didn’t know who would come. Close to three-hundred people showed up for the water balloon fight of a lifetime, including one who drove four hours. “I saw this on Reddit and I just thought it would be a good time to come out and show Camden just because he does have that speech delay doesn’t mean that people aren’t going to like him.” Read more at Fox2now

Go, Camden! 300 strangers grant birthday boy’s wish

Camden Eubank has a speech delay called apraxia. He is homeschooled and didn’t have a lot of friends because of the way he talks. But he does now! Read more at HLNTV

Reddit Saves Boy’s Birthday

According to his parents, Camden suffers from a speech delay known medically as Apraxia. They said Camden’s brain can’t always put the words together under social pressure, which makes it hard to make friends. Read more at The Daily Caller

Party Invitation Goes Viral, Hundreds Attend Birthday Bash For Special 10-Year-Old

Camden Eubank welcomed his 10th birthday in grand style after several dozen people showed up to make his dream of having a massive water balloon fight a reality. In the party invitation on Facebook, Camden’s mom explains why her son deserves to have this one wish. “Camden is turning 10 on July 6th and wants to have an ultimate water balloon fight party with 2,000 balloons and lots of kids. The only problem is Camden has Apraxia of speech and because of the issues with articulation and some impulsiveness he has a really hard time making friends” The Facebook party invitation explains that Camden is a precocious child that is home-schooled because his disabilities would not allow him to be in a normal classroom setting and also to protect him from cruel remarks by other kids. Camden is hyperactive and impulsive, which would probably get him in trouble in a more structured setting. Because of his developmental problems, the now 10-year-old has almost no friends. Camden suffers from a condition called Apraxia, a disorder of the central nervous system, a “neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the body, and/or the jaw, cheeks, lips, tongue and palate that facilitate speech.” This prevents Camden from having a normal life and friends. “He mainly plays with his older sister and her best friend and one other boy in the neighborhood. This friend is 11 and has recently decided he’s too cool to hang out with a ‘little kid that can’t talk right.’ So poor Cam is left with no one else to play with.”  Read more at Inquisitr

Go, Camden! 300 strangers grant birthday boy’s wish

Camden Eubank has a speech delay called apraxia. He is homeschooled and didn’t have a lot of friends because of the way he talks. But he does now! Read more at HLnTV

Camden’s Birthday Wish

One kid’s birthday wish turned into a giant community event. When Camden Eubanks asked his mom for the ultimate water balloon fight party, she had reservations. Camden is home schooled due to his apraxia (which causes issues with speech articulation). He’s been in speech therapy since he was 2 years old and has made vast improvement, but sometimes it can still be difficult. “He’s a regular little boy,” says his mother. “Camden is a math whiz, loves history, and wants to grow up to be a country singer like Luke Bryan.” Read more at The Roanoker

Hundreds celebrate Camden’s 10th birthday balloon bash

Camden has a disorder that makes it difficult for him to talk to people, so Monday’s turn-out really meant a lot. Read more at WSLS news

International Press!

‘It’s the happiest I’ve ever seen him’: More than 300 children show up to the birthday party of home-schooled boy after his mom’s Facebook plea

  • Camden Eubank is homeschooled due to a speech disorder
  • He doesn’t have many friends and wanted a water fight for his birthday
  • Mom posted an open invite to Facebook, which went viral
  • Over 300 people – mostly strangers – went to the party Monday night at Troutville Park, Virginia, after hearing about the party
  • An extra 200 from all over the world sent him presents via Amazon
  • Over 5,000 water balloons were used
  • Local fire department arrived to soak the crowd

‘Camden is turning 10 on July 6th and wants to have an ultimate water balloon fight party with 2,000 balloons and lots of kids.

‘The only problem is Camden has Apraxia of speech and because of the issues with articulation and some impulsiveness he has a really hard time making friends.  He has been in speech therapy since he was 2 yrs old and has made great improvements over the last 8 years but still has a long ways to go.

‘He mainly plays with his older sister and her best friend and one other boy in the neighborhood. This friend is 11 and has recently decided he’s too cool to hang out with a ‘little kid that can’t talk right’. Read more at the Daily Mail UK

Over 300 kids turn up to celebrate friendless boy’s 10th birthday

Camden was born with a condition called Apraxia, which makes it difficult for him to speak – and, consequently, form friendships.

What was supposed to be a small bash turned into a huge celebration at the weekend, complete with a three-tiered birthday cake and around 6,000 water balloons – much to the delight of Camden.

Open invitation brought visitors from near and far.  Read more at the SunUK

Hundreds of people turn up to young boy’s birthday party after ‘Reddit hug’

Sometimes, the internet can combine for the forces of good and the results are a thing of true, heart-warming wonder. That’s what happened when the mum of 10-year-old Camden Eubank feared that no one was going to attend her son’s birthday party, and turned to the internet for help. Camden suffers from a speech delay known as Apraxia, and sometimes struggles to put words together when he’s placed under intense social pressure.  Read more at MetroUK

Hundreds Attend 10-Year-Old’s Birthday Party After Invite Goes Viral (Video)

Camden suffers from a motor disorder called apraxia, which makes it difficult for him to make complete sentences under pressure, and as a result, his parents chose to homeschool him. When he expressed interest in having a huge water balloon fight, his mother reached out to her Facebook friends to try to raise the party’s attendance. Read more at Elite Daily World News

Hundreds turn up to celebrate lonely 10-year-old’s birthday after Facebook invitation goes viral

Camden’s mum described him as the ‘happiest she’s seen him in a long time’ at the party, which was funded by kind donations Read more at Mirror UK

Mum’s Viral Invite To Son’s ‘Ultimate Water Balloon Fight’ Party Pays Off With 300 People Attending

Camden has Apraxia of speech, which makes it difficult for him to talk to other children in order to make friends, and while his mum was sure he’d have plenty of grown-ups in attendance, she wanted to help give Camden the birthday party he deserves.  Read more Huffington Post UK

 300 people show up to 10-year-old’s water balloon fight birthday “It makes any pains you’ve got go away.”

“Camden is turning 10 on July 6th and wants to have an ultimate water balloon fight party with 2,000 balloons and lots of kids.”

She wrote that he has a speech delay, known as Apraxia, and some issues with articulation, making it hard for him to make friends. Read more at YahoonewsCanada

Videos

 

Extra Coverage Videos from reporter Shayne Dwyer from WDBJnews who was one of the first to cover Camden’s party that day!

extra video of me getting blasted by the firetruck at the party. Just watch and you’ll see”

This is a video only extra cut of video of the water balloon fight that we posted”

Apraxia Research Survey

Thank you everyone for your active participation in this survey -we’ve had hundreds of people respond within just 2 days, and the survey is now closed! In fact so many people responded that they thought it was a mistake (verbal apraxia being a “rare disorder” and all) Again thank you so much everyone!

Awesome opportunity to help raise awareness about the need for apraxia research, as well as to help research what ever your child’s rare condition is if not verbal apraxia (which is included in the list for rare disorders)  It is requested that each person that wishes to participate has to be emailed by Cherab directly with Patient-Centered Outcomes Research Institute (PCORI)http://www.pcori.org/ copied on the email so they have a copy of each participant in this survey. As you will see in the letter below however, your participation is anonymous.

If you are interested in participating, which I so hope you are. Please fill out the form below and we will get you the information for the survey which should only take you around 10-15 minutes to complete. We all know there is a tremendous need for apraxia studies, now is the chance to tell those who can make a difference! And again I’m aware there are members here who have other rare disorders, this survey is for you too!!!

Here is some brief information

Dear CHERAB Foundation member,

“Our organization is partnering with the Patient-Centered Outcomes Research Institute (PCORI) and the American Institutes for Research (AIR) to conduct the Caregiver Survey. This is to help us understand your views about medical research and your interest in helping researchers decide what topics are studied. PCORI is an independent, nonprofit organization that was established in 2010 by Congress to fund research that will provide patients, their caregivers, and healthcare providers with the evidence-based information they need to make fully informed decisions. PCORI will use the information from this survey to decide what research to fund and make sure that it addresses topics that are important to you and other caregivers.

The survey is intended for caregivers of patients in the United States who are diagnosed with a rare disease. Caregivers – those family members and friends who assist in or support decisions related to the care for patients with rare conditions – are important stakeholders in patient-centered comparative effectiveness research.

Since we serve people with Verbal Apraxia, we have agreed to assist with this survey by sending you this invitation to participate. Please visit http://cherabfoundation.org//2015/apraxia-research-survey/ and fill in your name and email to get the survey which should take around 15 minutes to complete.

Your participation in this survey is voluntary, and will not affect any future interactions with PCORI. All of your responses are anonymous, meaning we cannot trace the answer back to you. At the end of the survey, you will have an opportunity to provide your email address to receive a $5 dollar electronic gift card for Amazon.com.

Your survey responses will not be connected with your email address.”

Thank you,

Lisa Geng
Cherab Foundation

pcori Genetic Alliance