Please Make a Difference for the Future of Cerebral Palsy TODAY!!

“Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy” (RFTS, Inc) is asking for your support to urge lawmakers for dedicated research funding for Cerebral Palsy, the most common motor disability in children affecting over 800,000 Americans.

We went to Washington on April 26th, 2012 with members of the AACPDM and met directly with Senator Tom Harkin (Iowa), Chairman of the Appropriations Committee that funds the NIH and CDC (Labor, Health and Human Services and Education), and Senator Johnny Isakson (Georgia), member of the Senate Health, Education, Labor and Pensions committee about this important public health issue.

Now we need YOU (families, friends, individuals and children with Cerebral Palsy) to follow up with these two Senators directly to show how strongly we support Cerebral Palsy research funding at the NIH and CDC, and how grateful we are for their support.

Here’s what you can do to help!

Step 1. Please email Senator Tom Harkin (use his form at http://harkin.senate.gov/contact_opinion.cfm) and and Senator Johnny Isakson (use his form at http://www.isakson.senate.gov/contact.cfm), as well as your your individual Senators and Congressmen and women with the subject line: “Please Fund Cerebral Palsy Research Now”. Here’s a website where you can get all the Congressional contact information you need to contact your national lawmakers: http://congress.org/congressorg/directory/congdir.tt

Step 2. Please cc: info@reachingforthestars.org so we can track the number of emails being sent and hold lawmakers accountable for responding.

Step 3. Please read our updated Fact Sheet with the main points you can use in your email:

• Even though Cerebral Palsy affects 1 in 268 children, over 800,000 Americans and is the most common motor disability in children – there is no dedicated or line item funding of Cerebral Palsy causation, prevention or cure research at the NIH or CDC.
• We can no longer accept the status quo for Cerebral Palsy . The cost is devastating – both emotionally and financially, for families and for our healthcare and government system. The cost of not curing or preventing Cerebral Palsy is over $1.5 MM per person, and over $13.5 billion dollars alone in lifetime care costs for the children born with Cerebral Palsy in 2000.
• In 80 % of the cases of Cerebral Palsy, the cause is unknown due to lack of research.
• Any other additional comments you want to make about your own family situation or experience with Cerebral Palsy.

With a dedicated federal funding commitment, we can make strides toward finding a cure and best treatment, as well as prevention for Cerebral Palsy but understanding the risk factors, the cause, which treatments might be most effective.

Please help us reach our goal of having at least 100,000 emails sent to Senator Harkin and Senator Isakson by the end of May.

Together we will make a difference. Today we will step together towards Preventing Cerebral Palsy, Treating Cerebral Palsy, and Curing Cerebral Palsy for future generations of children.

After several years of spearheading the RFTS Iowa Chapter’s amazing fundraising efforts for pediatric Cerebral Palsy research, RFTS is thrilled to annouce that Kristi will now be serving as Vice President of Development.  Her responsibilities will span strategic fundraising on a corporate level, to securing grants, and providing a strategic platform for our ever growing roster of RFTS chapters around the country. 

You can read more about Kristi  Trotter in our Board of Directors section of our website  http://www.reachingforthestars.org/?page_id=52

Movies and most fictional stories have a reasonably similar plot projection that goes like this:

 Everything was normal UNTIL it wasn’t.

That’s it. That’s the plot nugget.

Marlin and Nemo lived happily in their reef UNTIL Nemo got lost during a school trip.

Wall-E lived happily in his junkyard, finding old junk to treasure UNTIL Eva showed up.

Bob and Helen Parr lived secretly with their children, UNTIL Bob had to go and have a midlife crisis.

 See? It’s the UNTIL that makes the story.

 Real Life is Rarely Like Fiction

You see, most of us try very hard to cling to that first half of the plot. Most of us try really hard to keep things the way they’ve always been. But you can’t do that in fiction. The Incredibles would be pretty boring if Bob just worked at his insurance job all day. Wall-E would be interesting for about 8 minutes if all he did was collect garbage. Finding Nemo happens every day inside of fishbowls.

But You Could Embrace the “Until”

What if losing your job was your Until?

What if a change of faith, a change in finances, the diagnosis of Cerebral Palsy brings you to your Until?

You’ll Never Know, Unless…

Most of us ward off our “untils”, as much as possible  but what if you didn’t…or couldn’t?   What would life be like?  How would you see the world, if you were at least open to the possibilities of where your until might bring you? 

When a child is diagnosed with Cerebral Palsy, everything changes.  Until that diagnosis, everything is one way.  After the diagnosis, things are different.  What does this mean for you?  Your family? Your child?  As adults, we are modeling how to cope with adversity and life’s challenges.   What are we teaching others?  What do we have to teach? What do we have to learn?

What do you think?

The word disability really bothers me. Look at the word again. I am not an English major, but I know that the prefix “dis” means the absence of. So the word disability means the absence of ability. If that’s the case, then yes, I have a disability. I cannot do fractions. In fact, when it comes to anything having to do with math, I struggle mightily. When it comes to home improvements or car repairs, I don’t know which end of the screwdriver to hold.   Another disability.

But there are many areas of my life in which I am very capable. Some big, others small. Everyone has some ability to offer this world. You just have to find it. It might be hidden deep down inside you or your child,  just yearning to come out. 

For my disabled friends, don’t let your handicap hold you back.  Don’t listen to the people that tell you it cannot be done. My parents told me that I could do anything that I put my mind to, and I believe that to be true for anyone, regardless of obstacles faced.  If you don’t push yourself to find your ability, who will?  

Franklin Delano Roosevelt suffered with polio and became President of the United States.   Albert Einstein didn’t talk until the age of three, and was severely dyslexic. The English author/poet Milton lost his sight at the age of 43, and then wrote the classic tale Paradise Lost.  How about Bonnie St. John who won silver and two bronze medals in the 1984 Paralympic Games as a ski racer; graduated with honors from Harvard University; won a Rhodes Scholarship to Oxford.  Did I fail to mention that Bonnie has one leg?   What would the world be like if these people had given up?   Can you imagine FDR saying, “I can’t do it, it’s too hard.”

Have you always wanted to paint, but thought it was a waste of time?  Perhaps you’ve felt a strong desire to get up on stage in your community theater but were ridiculed when you shared your dream out loud?  I have been laughed at.   Most people thought it was nuts for a guy with Cerebral Palsy to even dream of joining the Navy.  Mocking turned to cheers 20 years later when I retired as a Senior Chief Petty Officer.

When I decided I wanted to write my memoir, some scoffed. “You’ve never written anything before. “What makes you think you can write a book?”   Well, Someone Like Me, An Unlikely Story of Challenge and Triumph over Cerebral Palsy is sitting proudly on store shelves now.  It appears that I have the ability to put my thoughts down on paper is such a way that others enjoy reading them.

You might not become President of the United States, discover new math theories, or write an epic novel. But then again, you might.  So I ask you. What’s your ability?

John W. Quinn
RFTS, Executive Board Member/ Motivational Speaker and Author
Someone Like Me – An Unlikely Story of Challenge and Triumph Over Cerebral Palsy
www.johnwquinn.com    www.twitter.com/johnwquinn

Dr. Vargus-Adams is a pediatric physiatrist at Cincinnati Children’s Hospital Medical Center, University of Cincinnati. She graduated from Brown University, the Yale School of Medicine, and the Harvard School of Public Health. Dr. Vargus-Adams completed both a combined residency in pediatrics and physical medicine & rehabilitation and a research fellowshipin pediatric rehabilitation at the University of Cincinnati/Cincinnati Children’s. She joined the faculty at Cincinnati in 2000 and contributes to the training and education of residents and fellows.

Presently, she is involved in developing a comprehensive CP program and serves as its Research Director. In addition to her clinical focus in CP, Dr. Vargus-Adams is interested in research regarding clinical effectiveness and outcome measurement in CP. She has received career development awards from the NIH and CPIRF.  Her research projects have included studies of therapy and
pharmaceutical interventions for CP and work to evaluate and understand outcome measurement tools.

Dr. Vargus-Adams has been a member of the AACPDM since she was in
residency and has served on the Advocacy Committee (2004-2010, Chair
2008, 2009) and the Scientific Program Committee (2005, 2009). She is now a member of the AACPDM Board of Directors, the American Academy of Pediatrics and several other medical and research boards, including the editorial board of Physical and Occupational Therapy in Pediatrics, and the board of directors for the local United Cerebral Palsy chapter.

Over the years, I’ve tried various methodologies to improve my strength, balance and to relieve pain.  Recently I’ve found a wonderful fitness routine that addresses many physical issues commonly found in people with cerebral palsy. 

 I’m talking about yoga.  Specifically, Bikram yoga. 

 You might be thinking.  Yoga?  Come on, John, isn’t yoga just a bunch of people chanting in a circle while standing on their heads? 

Oh, no, my friends.  It’s a workout.  A serious, 90-minute workout.  As the Bikram Yoga of Tucson website www.bikramyogatucson.com states, “The series consists of 26 postures (asanas) and two breathing exercises, performed in a given order in a heated room.  This series is designed to benefit every muscle, tendon, joint, ligament, organ, gland and cell in your body. It will detoxify you and improve the functioning of all bodily systems.” 

 Sounds intimidating but it’s not.  Attendees bring a towel to spread out on the floor and a bottle of water for hydration.  An instructor, located at the front of the room, calmly leads the class through a standing series of movements (postures), followed by a series conducted where your body is on the floor.  Each posture is done in a given order and each exercise is done twice. 

In Bikram yoga, they don’t start out by doing wild movements that are going to hurt your body.  Each posture leads into the next.  It’s a slow, steady progression.  The stated benefits of doing Bikram are something that anyone with cerebral palsy would love to experience:   

  “…improves elasticity of the spine.”

   “…good for hip and back pain.”

    “…excellent for posture and balance.”

As someone with CP, I find the standing series to be the most challenging because those postures focus primarily on balance, posture and core strength – my body’s challenge areas.  Because of weak leg muscles, it’s very hard for me to even stand with one foot off the ground.  I have to use the balance bar in the back of the room for a bit of support for a few of the 26 postures, but that’s okay.  I learned that the only expectation is that you do your best.  There’s no place to get to, no competition with others.  I’m not pressured into forcing my body to do something it cannot do.  Diane Faircloth, the owner of Tucson studio where I practice says it best when she states, “Bikram yoga is about healing, not curing.  It’s about coming to terms with the body you have and moving forward each day.”  I like that. 

Bikram yoga is different from other styles because of the heat.   The studio is heated to 105 degrees.  I am not kidding.  It does take some getting used to, but to be honest, I really enjoy the fact that it’s hot inside the room.  It allows for a safer, deeper stretch than someone who is practicing yoga in a cold, air-conditioned health club. 

 I also like the fact that there are no machines, rubber tubes or balance balls.  Yoga uses one’s own body to heal itself.  I feel the results of my efforts immediately.  Unlike working out at the gym, where I always felt out of place, nobody laughs when I cannot do something.  The instructors are very supportive and encouraging. 

 I’ve been taking Bikram yoga classes for 90 days now and the results have been fairly remarkable.  My balance has improved to the point where I can step off a curb without fearing a fall.  I’m more aligned when I stand and sit, since Bikram yoga has improved my posture by elongating my spine.  Overall, my body is stronger and flexibility has returned to my hips.  I can now reach down and touch my toes without pain.  I can get in and out of a car with more ease, possibly a little grace even!  Sure, my former routine at the gym did improve my strength, but the flexibility I’ve achieved with yoga is amazing.  I still cannot do all the postures perfectly, but as the instructors constantly remind the class, you don’t try and do Bikram yoga, you practice it.  I walk out of each class knowing that I accomplished something.  It’s a great feeling. 

Is Bikram for everyone?  No, of course not.  But, as someone with cerebral palsy, I find Bikram yoga to be exactly the type of exercise I need to help combat the challenges of everyday living. 

John W. Quinn, RFTS Executive Board Member
Motivational Speaker and Author
Someone Like Me – An Unlikely Story of Challenge and Triumph Over Cerebral Palsy
www.johnwquinn.com

RFTS contingent with Iowa U.S. Senator Charles Grassley

As you know, federal funding for national CP research does not currently exist despite the fact that CP is the most common motor disability in childhood, affecting over 800,000 Americans.

 It is a serious and growing public health issue. We are working to change this, but we can’t do it without you.  Parents speaking up can make the difference. 

The more parents, friends, family members and caregivers who speak up to their national lawmakers, the more responsive they will be. We continue to advocate for federally funded, national Cerebral Palsy surveillance and epidemiological research to be conducted by the CDC (Centers of Disease Control and Prevention), and new treatment research by the NIH .  Please Click Here to see exactly what we’re recommending in terms of research and funding, and why.

National lawmakers have emphasized the importance of parents raising their voices, writing letters to their Congressmen/women, Senators and the President expressing how important it is to have national Cerebral Palsy research become a recognized public health issue and research priority.  The more letters, phone calls, emails and faxes that are sent now during this critical budget time, the better chance we have to make a difference for children with Cerebral Palsy.

If you are interested in more information please call us at the phone number listed on our Contact Us page, reach us on Twitter at www.twitter.com/reach4stars or email us. We would love to have more families involved. There are many ways you can help.

It’s not too late to add your voice. We can’t afford to be silent. We need to continue to speak up and let our national lawmakers know why we need more federally funded, national cerebral palsy research. We encourage you to use the main points in our Fact Sheet to your Senators and Congressmen. One person really can make a difference!

Your phone calls, faxes and emails really do make a difference. Please let your voices be heard.

Why might you want to follow up with a phone call? There are thousands of new bills being introduced in Congress. There simply is not the time to review in detail all of these bills. There are hundreds (if not more than 1,000) health care related bills introduced in the Congress every year and a member usually has only one staffer partially dedicated to working on health care issues. National lawmakers need to know that CP research is important as they are making their funding decisions. Tell them that it is.

Please join us on our journey of hope and change. Thank you!

Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy
Advocacy in Action Committee

Click here to register for the event.

For additional information please contact Julia Richardson at 404-498-4054 or jrichardson1@cdc.gov

Duke University Medical Center is conducting a study to test whether an intravenous
infusion of a child’s own cord blood cells, banked at the time of their birth, will lessen the
symptoms of cerebral palsy. Children, ages 12 months to 6 years, diagnosed with spastic
cerebral palsy may be eligible for the study if their cord blood cells were banked when
they were born.

Read More Here

An occasional look at the star-dusted army marching on Washington almost every day in hopes of illuminating us. Tuesday’s VIP foot soldier: Michael Kutcher

Read the rest at their website.