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Take the You're the Cure Advocate Survey

2015 was a great year for You're the Cure advocates and the many policy efforts that you work on. We have big plans for 2016, and we want to hear from you and what you want to see in the future for You're the Cure.

So take the survey now and let your voice be heard.

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Claire Hick, Southaven

Our 2015-16 Mississippi Advocacy Committee is composed of 12 individuals from across the state with different occupations, who have a great interest in advocating for policy change for heart-health issues. Throughout the year, we will introduce some of our members. Today, we'd like you to meet Claire Hick of Southaven.

How long have you been a volunteer with the AHA and in what capacity?  I’ve worked for the past five years on our team, fundraising for the annual Heart Walk. I’ve recently taken a more active role this year organizing a larger fundraising event at our hospital.  This is my first year serving on the Mississippi State Advocacy Committee.

Who or what inspires you to help and volunteer your time to the work of the AHA?  I see first-hand the great work the AHA does as an organization to save lives. Most recently, we partnered with the AHA putting red hats on babies born on National Wear Red Day in February. The hats were an education for new parents that the AHA’s advocacy successfully lobbied to pass legislation to check all babies born in our state for congenital heart conditions before leaving the hospital. Through the media, the new law was also publicized in several area newspapers with the red hat baby photos to educate the public.

What heart healthy issue is most important to you and why?  Sudden cardiac arrest is a more important issue to my family and I. Seven years ago, we lost our nephew to sudden cardiac arrest because an AED wasn't used on him in the less than the seven minutes that is recommended. Since then, our family has raised funds at an annual event and placed more than 50 AEDs in public buildings, churches and sports venues in our area. Since installation, many of the AEDs have been used to save lives.

What are two ways you keep yourself healthy?  My husband and I play tennis, and we are starting to teach our three-year-old son to play. On days we can’t make it to the courts, we enjoy spending time together in our backyard. 

How is your community healthy that makes you proud?  Our city, Hernando, has won multiple awards recently for promoting family health.  They’ve added walking trails, resurfaced tennis courts, rebuilt playground equipment, organized scavenger hunts, built bike trails and held community walk/runs. Our mayor, Chip Johnson, has been the driving force to make Hernando a healthy city. My employer, Baptist Memorial Hospital-Desoto, is also a partner in the effort and has been the presenting sponsor for H.E.A.L. (Healthy Eating Active Living). This is an annual 10-week partnership created five years ago, that gives incentives to families for getting healthier, offering free weight-loss coaching, daily exercise classes and heart risk assessments. 

Recently, I accepted proclamations on behalf of the American Heart Association in Southaven and Hernando for National Wear Red Day and National Heart Month. (See included pictures).  I'm proud of both of these cities where I work and live.  It's encouraging to see them moving in the right direction of being more heart healthy.  

How do you stay updated on current public policies in your state?  The Mississippi Hospital Association, AHA and DeSoto Economic Council send e-newsletters with public policy updates, and our team works to discuss issues and legislation with our delegation.

If you could help advocate for one change in your state, what would it be and why?  DeSoto County residents have one of the lowest unemployment rates and highest median wages of any county in our state, but we have the highest number of uninsured residents in our state.  Part of this is because the employees are not full time or are temporary employees through agencies. This is a loophole in the Affordable Care Act that affects employees who have worked years for area employers but are still considered temporary employees. Insurance by the employer is not required, and the employee’s income is high enough to not qualify for any health exchange subsidies when he/she looks to find coverage. Most opt for no health insurance for their families due to the premium costs.  Mississippi also did not accept the federal funds to expand Medicaid making the working poor who qualified in the past not able to qualify now.

Do you have a favorite AHA/ASA event you annually attend?  What is your motivation to participate?  We created at our hospital an event we plan on making annual called “Fashionably Heart Healthy.” Survivors of heart conditions are the models, and community leaders are invited for a luncheon and fashion show. All proceeds raised go to AHA.

Tell us one unique thing about yourself. 

I won the International Science Fair top award in chemistry in high school. The research done made national headlines and caused the Food & Drug Administration to change the chemical required components in plastic wrap due to dangerous levels of a suspected carcinogen migrating into high fat foods. A love for science and communication paved the way for me to take care of others in hospital administration.

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Mississippi Communities Celebrate American Heart Month

This American Heart Month, we encourage you to find out your heart attack risk and develop a plan to live a healthier life.

And we’re thrilled that local communities are spreading the word about heart health! Numerous cities throughout Mississippi have issued proclamations in honor of American Heart Month and/or National Wear Red Day, which was celebrated on February 5. Proclamation cities include: Jackson, Madison, Ridgeland, Pascagoula, Ocean Springs, Diamondhead, Hernando, Southaven, Gulfport, Clarksdale, Tunica and Tunica County and the Mississippi State Legislature.  The Governor's Mansion and Jackson City Hall also were lit red in observance of National Wear Red Day.

We thank these communities for calling residents to take control of their heart health. Together, we can take a stand against heart disease. More photos of these proclamation ceremonies and building in Mississippi that lit red can be found on our Metro Jackson Facebook page and/ or the You're the Cure Mississippi Facebook page.

Pictured below:

(Top Picture) Thank you to Senator Sally Doty for sponsoring the Senate Resolution to recognize National Wear Red Day! ‪#‎GoRedWearRed‬   From left to right: Senator Barbara Blackmon, Tina Lakey, Christy Bridges, Carol Dendy, Senator Sally Doty, Senator Rita Parks, Senator Angela Turner,  Senator Tammy Felder Witherspoon, Senator Jennifer Branning

(Middle Picture) Representative Becky Currie sponsored House Resolution 17 recognizing National Wear Red Day! Thank you for your support!

From left to right: Christy Bridges, Carol Dendy, Representative Becky Currie, Tina Lakey

(Bottom Picture) Cities across Mississippi proclaiming National Wear Red Day and National Heart Month.

  

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Christopher Pena, Mississippi

Christopher Pena, Richland, MS

Christopher's Mom, Kristi, shares her son’s story with heart disease...

An update on Christopher since the original article published in 2014: Since the article, Christopher has been diagnosed with prolonged QT Syndrome, an electrical issue of the heart. Two weeks ago, we learned that the function of his heart has increased, while the thickness and enlargement has also increased (cardiomyopathy relapse).  At this time, we remain hopeful that this is due to growth and an increase in heart medicine will fix this issue.  In the meantime, it's a reminder that we must live by faith every day. In January, Christopher went on his 'Catch a Dream' trip where he harvested an 8 point white tail deer. They say that while he is the youngest hunter to date, that he is the best shot they've seen!

[Original Article]

My son Christopher was born in April 2008.  Shortly after birth, he appeared to be struggling under the vigilant watch of his nurses.  A pulse ox reading indicated low oxygen, which led to a chest x-ray revealing Christopher had a severely enlarged heart.  Doctors diagnosed him with non-compacted cardiomyopathy, a very rare condition in which the heart muscle remains sponge-like after birth and causes the heart to be very weak. 

Christopher's cardiomyopathy affects his right and left ventricles, where it is very hard for his heart to pump and function correctly.  The medical team told us that the only option was a heart transplant.  Without a guarantee of survival, we opted against a heart transplant with only the very best quality of life in mind for our son.  Christopher was given 6 months at the most to live.  We believed that the doctors could tell us what they knew from books, but our Mighty God is the Great Healer and could fully heal his heart either way.  We knew our son would be okay, but we would need some help. 

At 45 days old, Christopher was admitted into hospice care.  Fifteen months later, he was released from hospice when an echo cardiogram showed that his heart function had tripled! 

At 18 months, his heart function was almost normal!!  God still performs miracles each and every day.

In February 2010, it was discovered that Barth Syndrome (BTHS) is the cause of Christopher's cardiomyopathy.  Barth syndrome is a very rare, sex-linked genetic disorder of lipid metabolism that affects males.  Typically, boys with BTHS present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth.  Other important features of BTHS include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature.  Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. 

There are less than 200 known cases of Barth Syndrome worldwide.  If people would hold hands from one end of the earth and go all the way around the world, only one of those people would be a boy with Barth syndrome.  It was described to us like finding a needle in a haystack for the doctors to discover that Christopher has BTHS!  There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. 

Christopher has most of the characteristics, including cardiomyopathy, neutropenia, muscle weakness and some other problems.  He has homebound, speech, physical and occupational therapy as well as therapeutic horseback riding.  He is currently doing very well, all things considering! 

Having this disease, which impacts our entire family, has been both the worst and best thing to ever happen to our family.     We still depend on miracles every day.  God is in control; He doesn't do half miracles and our trust in Him has never failed us.  Christopher has done many things to represent miracles, Barth syndrome, our local Children's Miracle Network hospital and Blair E. Batson Hospital for children.  He has been in countless news stories, mini documentaries and on the cover of multiple local magazine covers.  He even was mentioned in a recent Wall Street Journal article about rare diseases.  In addition to that, he is one of the 'faces' describing the 'look' of Barth syndrome in the orphanet journal of rare diseases written by one of the Barth syndrome specialists.

Christopher has met many amazing individuals along the way, including the President, Miss America and numerous other celebrities.  Christopher is in fact a living legend himself.

This past year, Christopher had a mild stroke.  For many reasons the American Heart Association is a cause near and dear to the hearts of our family.  Christopher represents the true need for pulse ox screening and congenital heart defects and stroke awareness.  We thank the American Heart Association and its volunteers for their tireless efforts in making sure the public has the knowledge and medical care needed to save lives.

To read more about Christopher or to follow his progress: Facebook--  Crusade4Christopher and/or CaringBridge Christopher. 

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Join us on National Wear Red Day, Friday, February 5

The American Heart Association’s Go Red For Women are asking for your support by participating in National Wear Red Day® on Friday, February 5, 2016 and donating to help fund research during American Health Month.

Why Go Red? Heart disease and stroke cause 1 in 3 deaths among women each year, killing approximately one woman every 80 seconds.  Fortunately, we can change that because 80 percent of cardiac and stroke events may be prevented with education and action. That’s why this year we are asking that you wear red on National Wear Red Day® and donate to Go Red For Woman. By doing so you help support educational programs to increase women’s awareness and critical research to discover scientific knowledge about cardiovascular health. 

And don’t forget to make your heart health a priority. Schedule your Well-Woman Visit, a prevention check-up to review a woman’s overall health so her doctor can measure blood pressure, check cholesterol and look for signs of heart disease, stroke and other illnesses. Then encourage others through your social channels to do the same.

We couldn’t make positive changes without the support and donations by individuals like you.

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The Gavel is Down, Mississippi!

Last week, the Mississippi Legislature convened for the 2016 legislative session. We're excited and eager to work with our lawmakers, both new and old, on many issues that will help make our state healthier. Please know that YOUR VOICE and YOUR WHY are incredibly important to the work that the American Heart Association does at the Mississippi State Capitol. 

Please take a moment to email your legislators! Welcome them to the State Capitol and let them know how the decisions they make impact the health of their constituents like you.

Several issues that we’re working on and urge legislatures to support are:

• Protecting and increasing funding that is vital to our stroke and STEMI systems of care;
• Promoting healthier workplaces; and
• Ensuring no harmful laws are passed that will keep Mississippi from tackling the challenge of becoming healthier. 

Tell your legislators NOW how important their support is!

The American Heart Association has found effective grassroots campaigns to be vital for making positive changes to health policies in Mississippi. We hope you’ll be a strong advocate for heart health this legislative session. Mississippi is why!

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Valeria Hawkins, Clarksdale

Guest Blogger: Valeria Hawkins

If I can make it there, I'll make it anywhere. It's up to you, New York, New York!

I had a conversation the other day with a dear friend and mentor and she said, "They see your glory, but they do not know your story." 

On November 1, 2015, I fulfilled my dream and finished the 2015 TCS New York City Marathon. Although I had the support of family, colleagues, friends and church members, the 26.2 miles were mine alone to m anage. I walked and ran further than I had run in my life and raised $3,000 for a cause in which I deeply believe in, The Alliance for a Healthier Generation. Finishing the race, wearing my medal and realizing this dream all were just a part of the journey.

It brought my brother and me closer together. I have photos of us training in the dark and in the rain. At one point during the race, friends and family were unable to track my progress through a mobile application, which literally updated them every few miles of my whereabouts. I know I had people worried, but my brother, Walter Hawkins, boldly said, “Val didn’t quit. I know she didn’t.” When a person has seen you at your weakest, they also know your strength.

This journey was not easy for me. Over ten years ago, I was diagnosed with an autoimmune disease. The doctors thought I had cancer and removed my thyroid. Your thyroid is what regulates your metabolism and energy level, so the last ten years, there were many days where I had to push myself just to do every day normal activities like getting out of bed.

Then, a year ago I was diagnosed with a heart defect and my cardiologist believed that I might need open heart surgery to repair it. Additional tests followed, and he realized that it wasn't as severe as the initial test had shown. However, I did have the following: an abnormal electrical cardiogram, hypertension, mitral regurgitation, and stroke syndrome (TIA).  I knew I had to be very proactive about my health at this point. With my own father living with a pacemaker, I did not want to go down that path also.

Through diet and exercise, it could be corrected. To God be the glory. Once my heart became much stronger, I was cleared by my doctor to train for the 2015 TCS New York City Marathon! Oh, and three weeks before the race, I injured my hip and had to see a chiropractor in Helena, Arkansas several times a week. None of these are excuses, but a testimony to God's amazing grace. I can do all things through Christ who strengthens me.

There are so many lessons I could share that I learned on this journey, but I will share two. First, we must remember to encourage one another, even when you're going through your own trials and challenges. Although I had my own race to run, I slowed down to encourage someone else and made sure they also finished. Second, hold onto your faith, especially when you feel tired and weak. The marathon had 49, 617 finishers out of a starting field of 50,235. What an amazing journey and accomplishment! I got tired and my body ached, but I was one of the 49,617 that finished.

Remember the race is not given to the swift nor the strong, but to those that endure unto the end!

________________________________________________________________________________________________________________________________________________________________

Valeria Hawkins is the Program Manager for the Mississippi with Alliance for Healthier Generation founded by the American Heart Association and the William J. Clinton Foundation. In that role, she is the primary contact and service provider for schools located in Mississippi. She provides technical assistance for schools across the state of Mississippi and parts of Arkansas.

Prior to joining the Alliance, Valeria was a Community/Youth Program Director serving counties in the Delta for the Partnership for Healthy Mississippi, a statewide tobacco prevention organization. She has worked for the Mississippi Department of Human Services and coordinated counties' task forces in relation to issues affecting youths in the Delta. She is skilled in organizing grassroots initiatives, youth development programming and passionate about working to improve the Mississippi Delta .

Valeria has a B.A. in Communications from Mississippi Valley State University and a master’s degree in Public Administration from Arkansas State University. She is a certified grant specialist and has served as a grant reviewer for the U.S. Department of Education. Most recently, Valeria received her certification as a Certified Health Coach from the Institute for Integrative Nutrition.

Valeria has spoken on panel discussions at national conferences for the National Association for Black Journalist and the Forum for Black Public Administrators regarding childhood obesity. She also received the Presidential Gold Volunteer Service Award for her volunteer work with the Community Foundation of Northwest Mississippi’s Get A Life! Initiative, and was recognized as a 2010 Health Champion by the Community Foundation Regional Health Council. She is a member of the Community Foundation of Northwest Mississippi Regional Health Council and the Mississippi Place Matters Team and serves on several committees that deal with health disparities in Mississippi. In 2014, Valeria was one of ten to receive NASPAA’s inaugural “Public Service Matters: Spotlight Award.

Last, but not the least, she recently finished the 2015 New York City Marathon!

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Braydee Clair Little, Mississippi

Braydee Clair Little: Pope, MS

One of the happiest moments in our life as a married couple was March 7, 2011, when our second daughter, Braydee Clair, was born. 

Two days later when we were getting ready to be discharged, the doctor examined Braydee Clair for her last full checkup.  At this time is when the physicians discovered that her organs were not all on the correct side.  Her heart is on the right side of her chest, her liver is midline, and she has multiple small spleens.  Her heart is like a "mirror image" of a normal heart.  The blood vessels bringing blood from her lungs were not connected to the heart properly.  She also had a hole between the two upper chambers of the heart, and between the two lower chambers of her heart.  Also, the valve inside the heart between the right upper and lower chambers was not normal. None of these things were detected during my pregnancy with the ultrasounds.  They did release her to go home, but we had to follow up with a cardiologist as soon as possible.

Once meeting with her cardiologist, it was decided that eventually over time she would need to have surgery on her heart.  At seventeen months of age, Braydee Clair, received her first open heart surgery.  The surgery took place in Philadelphia, PA at The Children's Hospital of Philadelphia.  The surgery was so complex that her physician near our home felt more confident sending us to do the surgery in Philadelphia.  While in Philadelphia, Braydee Clair ended up having two open heart surgeries and four bypasses.  We stayed in Pennsylvania for five weeks.  The surgeries corrected the way the blood came back to the heart and closed the holes between the chambers.  It was a very complex surgery, but  Braydee Clair has recovered from the surgeries, and she is doing amazingly well! 

She has future surgeries to come and takes medicine daily for her heart.  She still has an abnormality of the mitral valve on the right side of the heart that "leaks" because of the difficulty repairing it initially.  This is partially responsible for heart enlargement.  Braydee Clair still has no sinus node (internal pacemaker), so her heart rhythm is maintained by an internal "backup" pacemaker. 

All of this seems like a lot, but we know God has a special purpose and a specific plan for Braydee Clair.  We thank Him every day for blessing our family with her and her "unique" heart.  Anyone that meets her falls in love with her!  Braydee Clair is our inspiration, and we are just enjoying each day that the good Lord allows us to have with her. 

Braydee Clair is now three years old.  There is no set date for the next surgery because they want her to grow a little more.  She is doing extremely well with her current condition, and we are buying as much time as we can before she needs another surgery.  However, my husband and I are still praying that God will continue to heal Braydee Clair's heart completely without needing anymore surgeries.
 
In dealing with Braydee Clair's heart problems and surgeries, we have found comfort in this particular Bible verse. "I chose you before I formed you in the womb, I set you apart before you were born.  I appointed you a prophet to the nations."  Jeremiah 1:5.  It just gives us a sense of peace in knowing that God made Braydee Clair this way for a reason, and that He will use her and her special heart as a great testimony for other families. 
 
Braydee Clair's heart defects were undiagnosed before birth.  We are fully on board to join forces with the American Heart Association and raise awareness and approval of passing life-saving policies like a mandatory pulse ox screening across our state to find undetected congenital heart defects before a newborn leaves the hospital.  Join our family in striving to get pulse ox screenings required in Mississippi.  OUR BABIES ARE WORTH IT.

--Written by Lindsee Little, mother

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Get Social With Your Members of Congress

Will you be on Facebook or Twitter today? Your Members of Congress and their staff will be, and it's a good place to reach them according to a report released in October by the Congressional Management Foundation (CMF).

The CMF report, #SocialCongress, says Congressional offices are listening to social media chatter and it takes relatively few posts or comments to get their attention. That's good news for us!

So, how can you use the Facebook newsfeed or Twitter timeline to get the attention of lawmakers and help pass heart healthy policies?

  • Follow your members of Congress, as well as state and local elected officials on Twitter. ‘Like’ and ‘Follow’ their pages on Facebook.
  • Tweet about our health policy issues, tagging the appropriate legislators by using the @ sign and their Twitter handle. For example: I’m from Pennsylvania, so I’d tag my U.S. Senators by including @SenBobCasey & @SenToomey in my tweet.
  • If they allow it, you can post about our issues directly on the Facebook pages of elected officials. Frequently, that feature is disabled but you are able to comment on their posts. According to #SocialCongress, Congressional offices typically monitor those comments for a limited period of time. Your best bet is to comment within the first 24 hours after a post.
  • Rally your friends and family members to tweet, post or comment about an issue on a single ‘day of action’. CMF’s survey data shows just 30 or fewer comments can be enough to make a legislative office pay attention.
  • Be sure to use the campaign hashtag if one has been created by your advocacy staff partners. The #hashtag allows all the relevant posts to be woven together to tell our story, and makes your post searchable by others interested in the issue.    

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Ron Schnoor, Ocean Springs

Our 2015-16 Mississippi Advocacy Committee is composed of 12 individuals from across the state with different occupations, who have a great interest in advocating for policy change for heart-health issues. Throughout the year, we will introduce some of our members. Today, we'd like you to meet Ron Schnoor of Ocean Springs.

 Occupation: I am Sr. Vice President and General Manager of Signal International’s Offshore Division located in Pascagoula, Miss.

 How long have you been a volunteer with the American Heart Association and in what capacity?  Since 2010, I have enjoyed volunteering with the AHA. Over the past five years, I've:

  • Led Signal’s fund raising efforts for the 2010 Jackson County Heart Walk.
  • Served on the Executive Leadership Team for the Jackson County Heart Walk in 2011, 2013, 2014, 2015.
  • Hosted at the home of Ron & Debbi Schnoor for the Jackson County Art for Heart Gala in 2011.
  • Served as Chairman of Executive Leadership Team for the 2012 Jackson County Heart Walk.
  • Currently serving on the State Advocacy Committee for 2015-16 and on the Executive Leadership Team for the 2016 Jackson County Heart Walk.

Who or what inspires you to help and volunteer your time to the work of the American Heart Association?  The people of my community, Jackson County, which has been good to me and my family for over 30 years now, and my desire has been to give back to this community and to the state of Mississippi. I want to do what I can to help this community and this state's people get off the bottom of America’s rankings in heart disease, stroke, obesity, diabetes, etc.

I want to help to grow a healthier environment for our children and grandchildren to grow up and live in. I believe strongly in the work of the American Heart Association/American Stoke Association (AHA/ASA), and the resultant benefits that work brings to all of us. We’ve made positive progress in the past five years, but there’s much more work to be done and more opportunity to be realized. I want to be part of that continued progress.

What heart healthy issue is most important to you and why?  I would have to say obesity due to its impact on so many health issues including heart disease, stroke and specifically diabetes.  Diabetes because I happen to be an adult onset, Type 1 insulin dependent diabetic.

What are two ways you keep yourself healthy?  Maintaining a healthy diet (I have too because I’m an adult onset Type 1 Diabetic), and staying active. I enjoy walking, moderate exercise, yard work, and chasing my grandchildren around the country watching them play ball.

How is your community healthy that makes you proud?  Seeing us improve our communities standing/ranking within the state and our states standing/ranking within the US in heart disease, stroke, obesity, diabetes, etc. year on year makes me proud.

How do you stay updated on current public policies in your state?  This is an area where I am the weakest. I have not been as active as I should be in political and public policy development except thru my association with the AHA/ASA.

If you could help advocate for one change in your state, what would it be and why?  Above all else, it would be to support healthy food initiatives in our schools, in our work places, and throughout our communities. Healthy diets by all would go a long way towards winning the battle to reduce the underlying causes of heart disease, stroke, diabetes, and the other associated diseases, and thereby dramatically improve the health, well-being, and quality of life of our local and state citizens.

Do you have a favorite AHA/ASA event you annually attend?  What is your motivation to participate?  The Jackson County Heart Walk and the Jackson County Art for Heart Gala. I attend these events in order to show my support of the AHA/ASA’s fight against heart disease and stroke. I believe leaders in the community should lead by example causes they believe in.

What have you learned in your time being a You’re the Cure advocate?  That life is vitally important, and it goes without saying that a healthy life produces a better quality of life than what is currently being experienced by many in our community, our state, and our country. We have the knowledge, technology, and resources to redirect ourselves if only we can build the support and determination within our people, and our government that’s needed to change the direction we’ve been going for the past 50 years.

 Why would you tell a friend or family member to join You’re the Cure?  Simply put, it’s the right thing to do.  In my view, supporting this cause is essential in order to improve the health, well-being and quality of life of our citizens today, tomorrow and for generations to come.

Tell us one unique thing about yourself.  I’m very “driven” with a strong desire to help the company or organization I’m associated with to be the best it can be.

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