Brothers Looking to Help a Friend Found Florida 5K Run/Walk

K Twins and Friend

Konstantinov twins with friends

In 6th grade twin brothers Adrian and Martin Konstantinov met Ben Juliano, a classmate with cerebral palsy. After hanging out for a couple of years and becoming good friends, the brothers asked Ben’s father if there was anything they might be able to participate in to benefit CP research or treatment to help people like their friend Ben. After a little digging by the boys and both families, they could not find anything local that would accomplish their goal. It only took a little bit of thought to hit on the idea of starting their own 5K run for CP.

They connected with United Cerebral Palsy of Central Florida and the Cerebral Palsy International Research Foundation, which supported their idea and enthusiasm from the start. The first race of what would become an annual event raised $7,500, with the boy personally organizing and securing sponsors. The boys learned how to make presentations to potential community sponsors and worked with UCP and CPIRF on how to determine how the money raised would be spent – an important key for gaining sponsor cooperation. They very quickly gained experience in public relations, giving TV and radio interviews and helping to raise the profile of the event.

Now in it’s 3rd year, the Lake Scary 5K Run/Walk will take place just before Halloween on October 25 in Lake Mary, Florida at the Lake Mary Preparatory School. It’s on track to be just as successful as the first two events in raising money for cerebral palsy. However, this year, the boys won’t be there with UCP to cheer on their friends, neighbors and classmates.

Martin Konstantinov

Martin Konstantinov

Adrian and Martin’s family just moved to the Washington, D.C. area. Their first order of business after settling in was to contact UCP’s national headquarters in D.C. to try to find some way to stay involved in the cause. While they plan to become businessmen as adults, they are hoping to continue working with UCP as interns or possibly planning a new event in D.C. to replicate their success in Florida.

“While we have not been as involved with the planning due to our move, other families in the community have taken the reins and are currently working hard to make this year great!” said Martin.

Even though they are now far away from their friend Ben who inspired their efforts, the brothers experience with the event and UCP of Central Florida keeps them motivated to do more.Being Honored in 2013

“The best moment from any of the events or work with UCP was seeing the wonderful playground cover that was purchased and installed in one of the UCP of Central Florida campuses with money from the 5K,” they said. “Many of the kids have sun sensitivity and the cover provides much needed shade from the Florida sun. Also, the school purchased Kindles for use in the classrooms and the children really enjoy using them. All of this would not have been possible without the support of the community who participated in or donated to the 5K and in turn became more aware of what cerebral palsy was. We knew that we had made a difference in these kid’s lives.” 

In the long run, the brothers hope that people will become more aware of CP and strive to help find treatment options.

“It is our goal that the event is viewed as an example for people on how they can make a difference in the lives of people with CP in their communities,” they said.

Writer Follows His Passion in Unique Way

Michael Lerman, who has cerebral palsy, describes how and why he created “420 Flowers Behind XVI Bars” and “Flow of Illuminati,” two books of poetry and lyrics remarkable not only for its content but for the fact that it was written, prepared and designed without any type of writing utensil, keyboard or pointing device such as a computer mouse or touchpad. You can see Michael’s work and purchase his books at www.michaelslyric.com

By Michael Lerman

Flow of Iluminati

Flow of Illuminati

“For as long as I can remember myself, I was always fascinated with music. Having Cerebral Palsy since the age of five months, playing an instrument or singing wasn’t really an option. But, there was something else. I started to read when I was 4. There were plenty of children books and alphabet toys. Nobody remembers teaching me how to read. I don’t remember, either. It just kind of happened. I must have put it all together, somehow. I remember that I used to turn pages by using my face, my mouth and my nose. So, books became everyday companion. I was reading all the famous science fiction, fantasy, and of course, poetry writers. It was music and books that got me through my childhood, and it wasn’t always easy. Although, despite all of the limitations, I never considered myself to be disabled.  Different?  Yes, very different. But then, all of us are “different.” That is one of the greatest characteristics of physical existence.

My first book, “Michael’s Lyric” didn’t start as a book. It started as a desire to create music. The first lyrics in the book were the first ones I ever wrote. Many lyrics were turned into songs. Music is the inspiration. Only four years ago, if somebody would have told me that I would have a paperback, I would have never believed them. I Just do not have the patience to write a book.  It’s just that I gathered all these lyrics and I needed somewhere to put them. A digital book seemed like a good way to go. Then, the paperback was created, as a last minute idea, just 3 months before the end of 2011. I think that an artist cannot be happy if no one can witness their creations. I figured, if I will continue to put out books, I might live to hear my lyrics on American radio.

There are very few authors that use voice software for limited tasks. The general consensus is that it is almost impossible to write, edit, and design (interior/exterior) a book by using nothing but voice software. If that is so, then, this book is the impossible. Not only that, it is also published by using voice software. It takes a good amount of patience and focus to use voice to text. While I write, I listen to an instrumental music the entire time.  So, I have to keep on beat and rhyme, keep check on ideas/concepts, while dictating and catching any mistakes that the software might make, all at the same time.  I am not even going to go into describing what difficulties cerebral palsy adds on to the entire process  I don’t generally mention any of this, because I would rather people to concentrate on the writing instead of challenges and difficulties I might be facing.

I have contacted major magazines, newspapers, television stations, music /art institutions, academies of education, and historical societies.  No one knows of anything like this book.  Throughout human history, there are some recollections of books like this one, books that were written by using air vibrations.  However, as far as I know, no one is aware of existing copies.  That leads me to believe that Michael’s Lyric is the first and only book of its kind.  In 2011, when the first paperback, “Michael’s Lyric (420 Flowers Behind XVI Bars)” was published, I didn’t think of it that way.  I was just happy that it worked.  It was like in the movie Back To The Future.  “It worked!  It worked!  It actually worked!!”

My website, www.michaelsLyric.com, is and always will be the home for the book series.  The domain existed before the book.  It took 16 years, 6 computers, 4 wheelchairs, and many microphones to create this collection of work. Just 8 years before the first lyrics were recorded as a demo, I was 13 years old, starting junior high school, and I knew almost no English. I remember one of the teachers taking an apple out of a lunch bag and saying, “APPLE.” Most people called me by my name, Misha. One day, I was watching TV, and I saw this amazing artist, Michael Jackson. I thought, wouldn’t it be cool if my name was Michael. I didn’t realize that Mihail is Michael, in Russian. And soon as my family moved from Moscow to Chicago, my name became Michael, automatically, out of convenience. At the same time, something else significant happened.  I fell in love with Hip Hop and R&B.  In 2009, when it came to choosing a name for the first book, it was natural, “Michaels Lyric.” That collection was available only in a form of a digital file.  In 2010, I decided that for every new book that is to come out, Michael’s Lyric shall be the name for the book series and the title of the most recent chapter shall be the name of the most recent book in the series.

That brings me to the title of the current book, “Michael’s Lyric (Flow Of Illuminati).”  There are several ways to understand this title.  Illuminati, of course, means enlightened. At some level, all is enlightened, everything and everyone.  Otherwise, nothing could exist.  And so, the title; “Flow Of Illuminati,”flow of humanity.  The 2nd and the 3rd chapters of the book contain 16 bar Hip Hop poetry verses.  Just like many Hip Hop lyricists, I pride myself on the flow of my bars.  Dare I say that there is no one in Hip Hop that writes like me.

Music, lyrics, Hip Hop, stories, the good, the bad and the ugly… it’s all in this book.  And yes, in its own way, it does talk about difficulties of having a physical disability.  But mostly, this book is everything that is human.  It celebrates the ability of Creation to expand and evolve, no matter what. This existence is all about love and passion. Follow yours.”

 

 

Study on the Genetic Causes of CP Enrolling Children & Parents

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Study on the Genetic Causes of Cerebral Palsy (CP)

 

The CP Genetic Research Network is currently enrolling mothers, fathers and their children with CP in an international genetic study that aims to identify new genes that cause CP. In turn, these discoveries will lay the foundation needed to improve diagnosis and treatment for affected children. Participation is simple– simply allow them to collect a cheek swab from the comfort of your home.


If you would like to participate or receive more information, please contact Jessica, the CP Genetic Research Network study coordinator at kruerlab@sanfordhealth.org.

 

Click HERE for their study flyer. You can also learn more by checking out their Facebook page.

 

 

 

University Seeking Individuals with Cerebral Palsy for Research on Employment

 

VCU-RRTC

Are you not working but want to work?

Would you like to talk about your experiences with seeking employment?

Can you share 90 minutes to talk on the phone?

You will receive a $50 gift card to use wherever Visa or MasterCard is accepted for your time if you participate in the phone call for this study.

 

Background:

If the answer to these questions is yes, the Rehabilitation Research and Training Center (RRTC) on Employment of People with Physical Disabilities at Virginia Commonwealth University wants to talk with you! They want to talk with people who have cerebral palsy, including transition age youth, who are currently unemployed. Anyone between the ages of 18 and 64 are encouraged to participate! Transition age youth should be 18 years old to 24.

The RRTC is conducting focus groups for people with physical disabilities about their work experiences. They want to know from you what experiences you face when job hunting.

These focus groups will be held over the telephone. You will receive a toll free number if you agree to participate. Everything you talk about with the RRTC will be confidential!

While your participation will not help you find a job, your input is very important! The information that you provide will be very valuable in the development of RRTC resources on work for individuals with disabilities, their support systems, employers and policy makers. If you decide to participate, the consent process is easy and online at:

http://www.vcurrtc.org/focus/index.cfm

If you need any accommodation to participate or have any questions, please contact Grant Revell at wgrevell@vcu.edu or (804) 828-6989.

Love of Hockey Bonds NHL Player, Boy with CP

Beyond the Offseason,” a show featuring athletes, teams and coaches who give back to their communities in the offseason, premieres this fall with a highly anticipated episode featuring a blossoming friendship between a popular NHL player and a boy with cerebral palsy. The full clip of this episode debuts on You Tube today, just in time to help raise awareness on World Cerebral Palsy Day.

Host Lisa Varga captures the story of Liam Traynor, a 12-year-old boy with CP and a life-long love of hockey. Lisa and her production team, with the help of Mike Balkin and Power Plate brought Liam a donated exercise machine and reunited him with his idol and friend, Philadelphia Flyers player Michael Del Zotto.

Their bond over hockey is obvious, as is Del Zotto’s genuine affection for the young boy. While many athletes give their time and money to help fans with disabilities and hardships, Del Zotto makes a special connection with Liam, exchanging phone numbers and staying in touch via texts. They even argue a little over a call in a hockey game on TV.

Beyond the Offseason is a show designed to shine a positive light on athletes who make a difference. The program was inspired by Lisa Varga’s brother Shane, who is a two-time cancer survivor. Miss Varga is a veteran actor, producer and host with film and TV credits such as Showtime’s Emmy-award winning series “Homeland”, NBC’s “Game Time: Tackling the Past” and “Marley and Me.”

For more, go to www.BeyondTheOffseason.com or follow Lisa and the show on Twitter: @TheLisaVarga, @TheOffseason1

 

Austin’s Journey

The following is a guest post from Jenny Schmit, a physical therapist and researcher at Cincinnati Children’s Hospital Medical Center who works with a client named Austin. Read the story of Austin’s personal journey from frustration to celebration below:

“I work primarily with children who have Cerebral Palsy (CP).  Through work, I have had the privilege of meeting a young man named Austin.  Austin is 17 years old and lives in Batavia, Ohio.  Images of his brain suggest that he had a stroke when he was in utero.  He has hemiparetic CP.  Austin plays the computer and watches television.  He is a teenager and like lots of them, he spends an awful lot of time sitting still.   Austin

Although the damage to Austin’s brain will not get worse, his mobility and function can continue to deteriorate. Unwelcome changes to bone, muscle, and the cardiorespiratory system can occur over time when patients with disability aren’t proactive. One of Austin’s best defenses is also a hot topic in public health today. Research suggests that decreasing the amount of time we spend being sedentary, and increasing the amount of time we spend engaged in physical activity is critical for everyone, but especially for children with CP!

At a clinic visit in April of 2014, Austin felt frustrated. Physical fitness testing at school meant running a mile, and it didn’t go well.

He seemed to be compelled to do something about it. Austin set an admirable goal; he announced that he would like to run, in its entirety, a 5K race.  He scoured the internet for his just right challenge, signed up for the Panerathon, in Mason, Ohio, which raises money to fight hunger (probably because the race includes a giveaway of free Skechers). He named the team that would support him the CP Warriors.

He worked tirelessly over the summer.  He spent Mondays, Wednesdays, and Fridays with outpatient physical therapists at Cincinnati Children’s.  He strengthened legs. He grew better abdominal muscles than most of the healthcare professionals who treat him. He practiced coordinated activities like skipping and jumping.  He walked on a treadmill.  He did silly things, like moving rings from one cone to the next with his foot or kneeling on top of big therapy balls without holding on.  And he ran.  He ran around the Medical Offices Building and met the people who live in the neighborhood.  He ran up and down the big hill that the Hospital lives on and doctors and nurses clapped for him.  He ran in the August heat and sometimes in unexpected rain. Every weekend, he ran around the trail at Lunken Airfield, with a team of volunteers from the hospital and CP Clinic and people who believed in him.  He ran with a dog, and sometimes a donated iPod shuffle and Rodney Atkins.  He ran while he talked about zombies and how to beat Halo and fried pickles.  He never ran without smiling.  His Mom filled a scrapbook with photos because while he ran, she and her husband filled up with pride.

Two things happened during this journey.

One is that Austin grew.  He threw up during a mile run in physical education class.  On Sunday, September 21, he will finish the 5K faster than many individuals without physical disability.

The other is that the people around him grew.  We thank him for his inability to perceive hurdles.  We thank him for reminding us that few things are out of the realm of possibility.  And we thank him for reminding us to carry ourselves forward (unless we are practicing walking backwards).

Please share his story.

If you live near Mason, Ohio, please come to applaud him at his finish line this Sunday.

And for heaven’s sake, can someone please make sure he gets a pair of size  9 shoes?!”

 

UPDATE: Austin completed his run! Watch updated news coverage here.

New Film Features Comedian with Cerebral Palsy

A new film released on Friday features Josh Blue, a stand up comedian with cerebral palsy known for winning NBC’s Last Comic Standing competition in 2006 and subsequent comedy specials on Comedy Central and Ron White’s Salute to the Troops on CMT. Dat Phan, who also competed to be a Last Comic Standing also stars.Josh Blue

“108 Stitches” follows a baseball team with one of the longest losing streaks in college history as they come to the realization that the school, led by the corrupt and unethical President of the University, has plans to disband the entire program.  Hilarity ensues as the misfits have just one afternoon to execute a plan to fill the stadium, sign the top recruit on the planet, and help send their coach out with a bang. Josh Blue stars as an unlikely pitcher who spins wild throws in just about every direction but the batter’s.

Affiliate UCP of Los Angeles, Ventura and Santa Barbara Counties was invited to the exclusive Hollywood premiere of the film this week and got a chance to speak with Josh Blue and the producers of the film about the character.

“Josh Blue said what he most liked about the character is that he is treated equally.” said Amy Simons, Chief Development Officer of UCP of LA. “Pretty much every one in the film is made fun of and Josh’s character is no exception. He’s not singled out because of his disability.

Order your copy now through this link and the producers of “108 Stitches” will donate a portion of the proceeds to UCP to help provide services support for people with disabilities.

UCP’s STEPtember Challenge Begins Today!

10,000 Steps Daily Minimum

 

2,000 participants across the U.S.       are taking 10,000 steps a day from September 3-30                 in support of UCP.

United Cerebral Palsy (UCP) is pleased to announce the launch of the third annual STEPtember fundraising event today, formerly known as the World CP Challenge. STEPtember is an international health and fitness event that aims to raise awareness and support for individuals with disabilities and their families.

From September 3-30, STEPtember participants will get active while supporting a great cause. Throughout the event, more than 5,000 teams worldwide will challenge themselves to take 10,000 steps a day. Each of the steps—or bike rides, yoga classes, or physical therapy sessions, as nearly any activity can be counted—will propel the teams up virtual mountains and track their progress. Teams can compare their fundraising and step activity against others from around the world, racing each other up the seven tallest mountains and spurring their efforts to new heights. Together, the teams will help to raise critical support for the nearly 180,000 individuals with disabilities that UCP serves each and every day.

Already, more than $115,000 has been raised in the U.S., and well over $1 million internationally through thousands of participants. 

“UCP is very excited to kick off this year’s STEPtember event! This month promises to be an incredible, worldwide effort to raise awareness and support for people with disabilities. Steptember is such a great way for anyone, regardless of ability, to get active and truly impact our organization in the process,” said Stephen Bennett, President and CEO of UCP.

“Our family is personally affected by disability and we know first-hand what perseverance can accomplish. Joining in the STEPtember campaign, like a of Team Hoyt, a father-son racing duo who have volunteered to be UCP’s STEPtember ambassadors this year. Team Hoyt

Here’s how to get involved in the STEPtember Challenge: 

1) Learn More –  Check out the FAQ section on the STEPtember website, learn more about the communities that UCP serves, and understand how to get started!

2) Register Today – It’s not too late to get involved! Register today at www.steptember.us and we’ll connect you with a local affiliate that can provide an event packet and information to jumpstart your involvement.

 

3) Donate Now – Even if you don’t want to take the challenge and register, support the cause by donating to the UCP National team. We’re aiming to raise $10,000. Every dollar donated will provide critical funds to sustain community programming, and purchase much needed equipment for individuals with disabilities and their families.

Steptember will culminate on October 1st with World Cerebral Palsy Day, a global innovation project to change the world for people with cerebral palsy. 

UCP Chats with U.S. National Paralympic Soccer Team

UCP recently spoke with Stuart Sharp, Head Coach of the U.S. National Paralympic Soccer Team, and two of the team’s players, Chris Ahrens and Rene Renteria to learn more about the sport. Chatting with us fresh after a team’s practice in San Diego, California, Sharp discusses the rules of the sport, its classification system, ways people can become involved and more. Ahrens, who has cerebral palsy and Renteria, who has a traumatic brain injury, share their stories of how they became involved with Paralympic soccer, as well as discuss their training routines. Check out the full video below! If you would like to learn more, you can follow the team on Facebook and Twitter or visit http://www.ussoccer.com/paralympic-soccer.

 

Family Ties Ensure a Life Without Limits

The following is a guest post by Betsy Mays, 24 who has three older siblings including Blake (31), Lauren (30), and Jamie (26). Lauren has Cerebral Palsy. 

Mays Family at the Beach

Mays Family at the Beach

“My sister Lauren is one of my best friends and she has Cerebral Palsy. Growing up I don’t think I realized that there was anything too different about my sister. I knew that she couldn’t walk, but that didn’t stop my brothers and I from wheeling (or dragging) her around. I knew she couldn’t talk, but my family created a type of communication that worked for us; we are all REALLY good at 20 questions. I knew she couldn’t care for herself, but that’s what we were all there for!

I loved and still love being around my big sister at every waking moment. She is my audience when my parents or brothers couldn’t stand to watch one more of my performances. She is my go to person when I want to go swimming, and she is the one person in my family that knows all my secrets!

Mays Family PortraitGrowing up my mom always told my brothers and I that not everyone would always be as kind to my sister as we would hope or that people may stare at her because they simply didn’t understand what Cerebral Palsy is. So, being the outspoken little ball of joy that I was, I loved to educate my friends (and strangers who loved to stare) about my sisters condition! I would let everyone know that my sister wasn’t “crippled” but that she was just like everyone else, and she just so happened to have Cerebral Palsy.  My sister has always, and continues to, live a life without limits.

I remember when my siblings and I were little we would put her on a sleeping bag or a bean bag and pull her around the house so she could play with us. My brothers and I made sure to always include her, and my parents made sure that Lauren was involved in anything she wanted to! She was an excellent student, participated in school plays, Special Olympics, and and graduated with a regular high school diploma!

She loves to go to the beach, swim, and loves to be around the whole family. My nephews and niece are growing up around my sister and they love their Aunt LaLa. At such a young age they have learned that a person is not defined by a disability!

Now that we are all older, my sister has developed health problems that my family was not quite prepared for. We have never really needed any extra assistance because my sister’s health has never been an issue that we couldn’t handle on our own. Lauren was the person in our family that was virtually never sick! Thankfully my family is really close and we have great friends who continue to show us love and support, and my sister is tough as nails!

Mays Halloween

Halloween

I am thankful that my sister has always been treated with respect and compassion by everyone she encounters. All of my siblings have grown up to be in helping professions- go figure! Blake is a police officer, Jamie is currently in school for health promotion, and I am a social worker. We all try to be advocates for people living with disabilities and I hope that other families out there are doing their best to educate family, friends, and strangers about what it means to live with a disability. I cannot speak for everyone, but my family lives to ensure that Lauren can live a life without limits!”