UCP at the “Margarita, With A Straw” NYC Screening!

On May 4, 2015, members of the staff at UCP National were invited to the New York City screening of the film “Margarita, With A Straw” at the Paris Theatre as part of the New York Indian Film Festival. The film centers around a young woman named Lila, a college student with Cerebral Palsy who is studying music. The film explores her desire to be loved and accepted for who she really is, while trying to navigate the world in her power chair. In the beginning of the movie, you see Lila in the mists of trying to win the affection of her band’s lead singer, Nima. After Nima rejects her advances, Lila learns that she has been admitted into New York University.

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UCP and CPIRF staff with lead actress, Kalki Koechlin (Lila).

Lila suddenly goes from her small college in New Delhi to the big streets of NYC. On her first week in the city, Lila happens upon a protest. During the protest, police begin to tear gas the crowd; this is where Lila meets Khanum. Lila and Khanum quickly begin a whirl-wind romance and are soon living together. Lila begins to come to grips with her sexuality, knowing that she will soon have to come out to her closest family member and her caretaker: her mother. Through a series of revelations, Lila’s family and relationship are turned upside down. Lila soon learns that she doesn’t need to seek validation from others, but in herself.

Sonali Bose_UCP

UCP with the film’s director, Shonali Bose.

After the movie, the film’s director, Shonali Bose, and its stars Kalki Koechlin (Lila) and Sayani Gupta (Khanum) talked about how they got into character and prepared for their roles. UCP had the opportunity to meet both Koechlin and Bose, take photos and discuss their thoughts and feelings on the film. For some of the staff at UCP National, three of which were born with Cerebral Palsy, this film was the first time they had really seen a portrayal that echoed parts of their own experiences on screen.

What sets “Margarita, With A Straw” apart from other films about Cerebral Palsy or disability, is the way you see Lila: She is not an underdog or a source of inspiration. She is just living her life, while trying to find her place in the world. As a viewer with or without a disability, you can identify with parts of Lila’s journey. This film gives viewers a look into the struggles that some face with a disability, because in the end, we all want to be loved and accepted for who we are.

Emily Gillis’ Journey to a Law Degree

Emily Gillis is set to graduate for Suffolk University Law School in Boston this coming Saturday. Emily’s law school journey has been different from most of her peers, her father, Joseph Gillis Jr., has taken her to every single class throughout her three years as a law student. Gillis was born with spastic-quadriplegic Cerebral Palsy and uses a power chair to get around.

Joseph Gillis would drive his daughter to her stop on MBTA’s Red Line everyday, often waiting patiently for hours between Emily’s classes, pick her up from the stop and drive them back to the apartment they shared together in Whitman, Massachusetts. He would often accompany Emily to her classes, helping to set up and break down her computer and would wait for her between classes, making sure she had everything she needed. When Emily was denied an aide for both school and at home, her father jumped at the chance to help his daughter succeed, already knowing how to navigate Boston, it was a perfect fit. “There are no words to describe what my dad has done for me.”, Emily says.

Emily Gillis and her dad, Joseph Gillis Jr. 2

Emily Gillis and her father, Joseph Gillis, Jr.

 

This incredible moment is about her hard work, her dedication and the support of her dad. When asked why he went to such great lengths, Joseph Gillis replied: “I think every parent would have done the same thing if they had the chance- “I’m just glad I had the opportunity to do so.” Emily graduated from the University of Maryland with a degree in Criminology in 2010; she has known she wanted to become a lawyer since her freshman year of high school. Those at Suffolk Law took notice of her father’s unwavering support, Associate Dean of students, Ann McGonigle Santos said “…He has given Emily a gift to thrive and lay the foundation for her to become an attorney in whatever field she pursues.” On Saturday, she will have a full cheering section, including her mother, Mary, who’s been battling cancer for the last few years and her younger sister, Kimberly.

For both Emily and Joseph, this is the end to what Emily calls a “bittersweet” journey and a future full of great experiences that await her.

 

From all of us here at UCP: Congratulations, Emily! And best of luck with whatever path you choose to follow!

Special Thank you to Tony Ferullo from Suffolk University’s Office of Public Affairs, CBS Boston and the Boston Globe for helping to contribute to this blog post.

Twin Brothers Step Up for UCP’s Steptember Challenge

United Cerebral Palsy (UCP) kicks off its annual Steptember Challenge registration period today with the announcement that Martin and Adrian Konstantinov will be our official Steptember Ambassadors in 2015. Following in the footsteps of past ambassadors such as Team Hoyt, the 15-year-old twin brothers are committed to raising awareness and funds to help people with disabilities and their families through United Cerebral Palsy.

Steptember is a four-week event designed to generate support for people with cerebral palsy and other disabilities. Beginning on September 2, teams from around the world will challenge themselves to take 10,000 steps a day and fundraise along the way until September 29, 2015. Nearly any activity, including biking, physical therapy and yoga, can be converted into steps on the Steptember website.

In 2012, the Konstantinov brothers co-founded the successful Lake Scary 5K in their hometown of Lake Mary, FL to benefit one of UCP’s local affiliate organizations on behalf of a friend with cerebral palsy. Now that their family has relocated to Washington, D.C., the brothers plan to put their energy and enthusiasm into helping UCP’s national efforts to rally teams participating in this year’s Steptember event. Last year, over 10,000 people participated in the challenge and raised more than $3 million globally through more than 170 organizations involved in the effort.

Being Honored in 2013

“We want to continue to spread awareness about cerebral palsy and contribute to this cause that we already feel closely attached to,” said the Konstantinovs.

The twins will be working with their Director of School Activities at the Maret School in DC to engage fellow students in the Steptember Challenge and will be on hand to help UCP promote the event. Not only do the funds raised during September directly benefit people with disabilities served by 80 UCP affiliates in the US and beyond, the steps taken directly benefit the participants as well in leading a more active lifestyle.

“We are beyond impressed with the efforts of these young men’” said Stephen Bennett, President and CEO of UCP. “They are an excellent example of the idea that a world of good can come from the intention to make the world a better place for just one person. Through their desire to help their schoolmate, they are benefiting thousands on people with disabilities.”

Email Tile vs 3

For more about Steptember, please visit www.steptember.us.

Videos Show That #CerebralPalsyCAN During Awareness Month

March is National Cerebral Palsy Awareness Month. Throughout the month, United Cerebral Palsy will be encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan on social media. On March 25, National CP Awareness Day, UCP and our partners in this campaign (listed below) will will feature submitted videos on our social media channels and websites.

Cerebral palsy (CP) is a broad diagnostic term used to describe a problem with movement and posture, due to damage or abnormalities in the brain that makes certain activities difficult. It is the most common motor disorder and the second-most common disability found in children. UCP aims to demonstrate through short, light-hearted videos that people with cerebral palsy have a range of interests and abilities, and in that respect are no different than anyone else. Find out more about the campaign and watch the video on My Life Without Limits, UCP’s new online resource and community for individuals with a range of disabilities at www.mylifewithoutlimits.org.


#CerebralPalsyCan Campaign Partners

United Cerebral Palsy: http://ucp.org/
My Life Without Limits: http://mylifewithoutlimits.org/
HandicapThis!: http://handicapthis.com/
Love That Max: A Special Needs Blog: http://www.lovethatmax.com/
The Cerebral Palsy Swagger: http://cpswag.blog.com
Ms. Wheelchair Michigan: http://www.mswheelchairamerica.org

Be Part of the Great Bike Giveaway

Great Bike Giveaway BannerDo you remember the freedom you felt, the confidence you gained, the pride you had when you received your first bike? UCP is proud to partner with the Great Bike Giveaway to help give children with disabilities the same feeling you had when that shiny new bike arrived at your home.

For the forth consecutive year Friendship Circle is holding the Great Bike Giveaway, a national contest giving away adaptive bikes to children with special needs. They are partnering with Freedom Concepts, Rifton, Buddy Bike, Ambucs, Triaid,Flaghouse, Mobo Cruisers Strae Sports, the Duet and Strider Bikes to give away adaptive bikes to children and young adults with special needs.

Why The Great Bike Giveaway?

Many children with special needs miss out on the childhood joy of bike riding because their physical or cognitive limitations make riding a bicycle near impossible. The Great Bike Giveaway will give children and young adults with special needs the chance to win an adaptive bike and have the feeling of pride, freedom and confidence that bike riding brings.

How The Contest Works

Adaptive bikes are tailored to a child’s needs. To meet the needs of the recipients in this contest, a separate contest is held for each bike type. The contest starts with two bikes of each type and money is raised to add more bikes as the contest progresses. Last year the Great Bike Giveaway ran eight different contests and gave away a total of 108 bikes! This year Friendship Circle hopes to give away 300 bikes to individuals with special needs.

Each bike page has a space where users can enter the contest. Submit a picture of your child with special needs along with a short explanation of why your child needs an adaptive bike.

From the winner of a Parent:  Judd, received his Rifton tricycle that he won through your bike giveaway. He loves it so much. His first time out with it , he pedaled .75 miles! Everyone at the track had a smile on their faces watching him enjoy his bike. The biggest smile there belonged to him though.

Two Ways to Win

Most Votes One bike in each contest will be given away to the entry with the most nominations. Nominations are received from friends and family clicking the “nominate button” on an entrants submission

Bike Raffle All the remaining bikes will be placed in a drawing. To be eligible for the drawing each submission must be nominated by at least 50 friends and family members.

How You Can Help

Whether you have a child with special needs or not you can help more children with special needs win an adaptive bike.

1. Donate To Add More Bikes

In addition to the bikes that have been sponsored, Individuals have the ability to donate to the Great Bike Giveaway to get more bikes added. Every time the donation meter is filled another bike gets added to the drawing!

2. Share and promote

Let as many people as possible know about the opportunity to win an adaptive bike by sharing the the contest via your social networks and email. You can also check out the resources page for additional tools you can use to share the contest.

Contest Timeline

March 4th 11:59 am

Contest submission deadline, no entries will be accepted after this time.

March 5th

Drawing (Drawing date is tentative and subject to change) Will be held and winners will be announced.

To enter the Great Bike Giveaway visit www.greatbikegiveaway.com For contest rules visit www.friendshipcircle.org/bikes/rules.

A Special Thank You To the Sponsors

Freedom Conceptsstrider logoMobo_Cruiserstraeucp_logo_tagline-1

Sally Wants a Sponge House

Sally, a six-year-old child from the UK who has cerebral palsy inspired this year’s World CP Day project by saying she wants a “sponge house” to “stop me banging into things.”

The World CP Day project seeks ideas from people with disabilities like Sally, their families and supporters and then challenges designers and innovators to turn one of those ideas into reality in a global competition for thousands of dollars in prizes.

Like Sally, many children and adults with CP can be prone to knocks, bumps and falls because of unsteady movements. Every aspect of living spaces can be a physical challenge for people with CP. Furniture, household fittings and fixtures, appliances, even walls and floors can be hazardous.

Take the Challenge:

Design a living space that that would minimize the risk of injury from knocks, bumps and falls for people with cerebral palsy. The design may incorporate one or more of these elements: physical layout, furniture, furnishings, fixtures, fittings, appliances, surfaces – e.g. walls, floors, and/or lighting.

Who Can Enter?

The competition is open to everyone, including students and industry practitioners in the fields of interior design, architecture, industrial design, furniture design, etc. An individual, group, university or company can submit an entry.

Applications are accepted until Friday June 19, 2015. There is no entry fee.

Prizes:

Institution prize (e.g. university team or company): $5,000

Individual prize:

  • Winner – one $3,000 prize
  • Highly Commended – two prizes of $1,000

In addition to the prizes, winners will be awarded certificates, acknowledged on the World Cerebral Palsy Day website and social media channels, and promoted to design media.

To Enter:

Register your expression of interest on the World CP Day website. We will send you the full competition guidelines and keep you posted throughout the competition.

www.worldcpday.org

Proudly supported by The Allergan Foundation

WCPD15_Logo_World_Hi-Res

 

A New Way of Connecting for People with CP

Frantz Alexis Headshot

Guest post by Frantz Alexis

One of the frustrations I have dealt with because I have cerebral palsy is that it is often difficult to find other people like me, who have CP, to talk to. The growth of the internet, specifically social media, has been very helpful in addressing that issue. Facebook groups, online forums, and the web have been invaluable resources. However, I still struggle with using these resources, as they often associate my posts with who I am and there is not a way to delete a post once I put it out there. I would bet that anyone with a health issue can empathize with the desire to communicate with others anonymously about some of the more private or potentially embarrassing aspects of their condition.

A few months ago I posted a question about my orthotics in a Facebook group for people who have CP. The question wasn’t that embarrassing. However, I didn’t want it exposed to a large audience.  Imagine my surprise a few weeks later when I was having dinner with a family member and she asked if I was able to resolve the issue. Apparently, the post was visible to anyone who was friends with me on Facebook! Needless to say, I was not happy. I wanted a way to ask these types of questions anonymously. After my experience on Facebook I started doing some research and many folks expressed interest in such an app.

Recently, I launched an app which couple of friends and I developed – Candor CP.  The app lets people chat anonymously with others who have CP. Having something like this app would have been like a gift from heaven when I was an adolescent (truthfully, it’s a godsend now). Growing up I had no one to talk with about some of the challenges of being different from everyone in my community. If I was ever frustrated or embarrassed, and it did happen on occasion, I had no one to chat with that could relate to my experience.

A couple of years ago I was researching having yet another surgery to manage the symptoms of my CP. On paper, the procedure looks very scary and fraught with risks,  my doctors and some friends advised me against having it done. The term “crazy” was thrown around quite a bit. While continuing to research the surgery I stumbled upon a Facebook group for people who have had it done.  It would be quite the understatement of the year to say that the people I was able to chat with in that group were instrumental in my decision to go forward with the surgery. Since I tend to be a private person I found that I communicated with members of the group mostly via private message. During these chats I learned quite a bit about the procedure, it’s benefits, and what it felt like coming out on the other side of the surgery. The personal endorsements from my new friends is what helped to confirm that I was making the right decision regarding having the surgery.  It’s a shame that their insights are locked away in my inbox and not publicly so that others can benefit. The surgery changed my life and gave me the ability to do amazing things like complete a Spartan Sprint. This is yet another example of how beneficial communicating with other CPers has been for me and can be for others.

Since launching the app there have been awesome conversations on a variety of topics: dating, surgeries, treatments and even fashion advice! It was also covered in a blog post by a Huffington Post blogger who also has CP.

I am very happy to see that people have found the app to be as helpful as I do!  I wanted to create the app because I learned first hand how powerful sharing experiences can be for people who medical conditions and I knew that there were people who were not sharing because there was no way to do so in an anonymous way. Candor CP is here to fill that gap!

Frantz Alexis
Frantz Alexis is a Product Manager in New York City he can be reached via email at frantzsdr@gmail.com.

From an Orphanage in Africa to a Life Without Limits

The McGee family agreed to allow Israel to be the “face” of UCP’s annual #GivingTuesday campaign. On Tuesday, December 2, you can put Black Friday and #CyberMonday behind you and do something selfless for families like the McGees. When you make a gift to UCP on #Giving Tuesday, Network for Good will give us $1 for every $20 donate to help people with disabilities and their families. 

Rebekkah McGee now writes a blog about their family and their adoption story, which you can follow at http://yestoadoption.blogspot.com/.

WhIsraelen Rebekah and Will McGee traveled to Ethiopia to meet their soon-to-be-adopted son Israel over two years ago, they never dreamed they were actually embarking on a completely different type of journey. Adopting internationally, they understood that there may be difficulties since Israel was coming from an institution, but they didn’t know exactly what to expect.

“We were young, we had only been married a year (when we decided to adopt). But we knew we wanted to make adoption a priority. It was important to us,” said Rebekah McGee.

Even at four months old, when they met Israel for the first time in Africa, they could tell that he had some developmental delays, but having never been parents before, the McGee’s didn’t know what that meant for the future.Israel2

In May of 2011, when Israel was seven months old, Rebekah and Will brought him home to the U.S. By the time he was nine months old and not yet rolling over, a church friend recommended the family to United Cerebral Palsy of East Central Alabama for early intervention services.

“We had no idea as new parents,” Rebekah McGee said about Israel’s disability. “But I’ve had 2 ½ years of supportive help with UCP. The team there has made me feel more competent that I had the skills I needed as a mother.”

“When they say it takes a village to raise a child, well, UCP is part of my village,” she said. “They have cried with me on the hard days. Anytime we have needed something, they have helped. They are so much more than just the services they offer.”

The McGees have taken advantages of all of those services from early intervention therapy to the daycare Israel is now enrolled in. And, earlier this year, Israel was featured in UCP of East Central Alabama’s annual fundraising telethon. The McGees recently got more details on how parts of Israel’s brain had been affected and a new diagnosis. Although the UCP team had not worked with a child with that specific diagnosis and Israel was only two months away from aging out of early intervention services, the staff jumped on researching the diagnosis to figure out how to best care for him.

“The reality of having a special needs child is that you see a lot of doctors and specialists,” said Will. “We have had to go through so many specialists to find someone who connects with Israel. It’s so refreshing that at UCP we don’t have to do that. Everyone connects. He has a relationship with everyone there.”

Israel now has a one-year-old sister, Edith, who does not have a disability and the family is thriving. Israel has come a long way thanks to the therapy and services he received. He is not quite talking yet, but walks with some assistance. There were difficult times, but Rebekah is glad UCP set the bar high for him to reach.

“Just the other day,” recalls Rebekah, “I was talking to his UCP service coordinator and she said to me ‘We have never put limits on Israel…and we never will.’”

 

family picture Oct 2014

What Does it Take to Live a Life Without Limits?

Here’s the personal story of Ula, who has challenges due to cerebral palsy as well as the normal ups and downs common to many people with and without disabilities. Her secret to living a life without limits? Taking care of herself and pursuing the things that make her happy, rather than focusing on other’s expectations. 

 

My name is Ula, I’m 34 years old and I have mild cerebral palsyUla Thepsouvanh

My mother was pregnant with me when she came to Canada from Laos. I was born with the umbilical cord wrapped around my neck and was pronounced dead for 5 minutes.

My parents, whom I love very much, kind of wrote me off. They thought that they would be stuck caring for me until one of us dies. They were fresh off the boat from Asia when my mother gave birth to me. So they had a lot on their plate just adjusting to life in Canada with my grandparents and my brother.

I have tremors all though my body and speech impediment for which I took speech and physical therapy. When I was a teenager I felt that I was “too cool for school” and quit therapy because it was boring. It was one of my regrets in life. I didn’t see the value of therapy until it was too late.

When I was 17 years old I wanted my driver’s license. It took me almost a year to convince my parents to teach me to drive and another few years before I decided to take my test. I failed my first time but passed the second time. I remember coming home and telling my parents I got my driver license, my parents and I started to cry. They were tears of joy and shock. It was one of my proudest moments. I did not think I was capable of getting my driver’s license because of my uncontrollable tremors. Surprisingly my tremors did not play a part in the way I drove.

I attended college for three years studying human services and Fetal Alcohol Spectrum Disorder (FASD) support work. I received assistance from an employment service for people with disabilities, which found me a job at the YMCA starting in a preschool summer day camp. I have been there for eleven years now working at a youth shelter as a counselor.

I was 26 when I met William, the love of my life, and we married three years later. We have travelled the world together. William is musician and a professional artist and no, he does not have a disability. When we were dating we bought a karaoke machine, which we used almost every day for six months. One day William told me: “Babe you’re a good singer and have a beautiful voice. All I can think is “okay no I don’t, did you forget that I have CP and a speech impediment?” After we got married we decided to take singing lessons together. Our voice coach, Cesar Aguilar, trained us in classical and in opera.Ula Photo 2

“Working with Ula was a wonderful rewarding experience. The lessons we had with her and her husband Will were always filled not only with singing but also with laughter and joy,” says my voice coach. “Ula always showed up to lessons with a great attitude and ready to have fun and learn new songs. Although sometimes overwhelmed by some of the songs or vocal and breathing exercises I gave her she always put her best foot forward and tried everything I asked. She was always aware of her speech impediment although it never interfered with her ability to sing.”

I asked my musician husband to teach me guitar and he suggested trying the ukulele because it’s small and only has four strings. I have been playing for four years now. I have always liked music and knew I had an aptitude for it. Someday in the near future I could see myself preforming live. I want to start a band with other women with disabilities.

For me, having CP means I am committed to self-care everyday. My life is structure; I wake up, do yoga, I go to the gym, play ukulele, and visit my grandparents. I do this everyday before going to work in the evening. I have to take care of myself physically and mentally. Taking care of myself gives me confidence and that confidence curbs my tremors.

I think there is always going to be a part of me that is bitter and jealous toward people that don’t have disability. I do have dark days. I think I don’t mind having cp. I think it helped shape who I am today; I like who I am. However I sometimes wish that people would just keep their thoughts and question to themselves. I don’t know how many times I get of accused of being drunk when I’m in public. There was one time I went to a grocery store. Three cashiers followed me out and tried to block me from getting in the car because they though I was intoxicated and threatened to call the police. I had to explain to them that I have disability. I was humiliated and angry I spent hours and hours crying. I get weird looks and I hear whispers – “why does she talk that way.”

But, it is hard to picture my life without CP. What kind of career path would I’ve had taken? What kind of a relationship would I have with my friends and family? Would I be in the popular crowd like my siblings? Cerebral palsy or not, everybody has limitations. These limitations are determined by the body and mind and not by other people. It’s up to me and you to test those limitations to the best of our abilities.

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 boys 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.

 

Updated news coveragehttp://m.clickorlando.com/teens-help-organize-lake-scary-5k/29400384