Rare diseases are life-threatening or chronically debilitating illnesses. Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research is limited. Very few cures exist. While the diseases are rare, collectively they affect more than 60 million people in the U.S. and Europe alone. Despite their great overall number, rare disease patients are the orphans of health systems which are often denied diagnosis, treatment and the benefits of research.

The cooperative efforts will help patients in areas such as:

• Access to correct diagnosis (Genetic testing, newborn screening)
• Increase availability of information (Coding and classification, telemedicine)
• Improve scientific knowledge (Registries and databases, international research platforms, multi-centered clinical research, development of drugs and diagnostic tests, training of professionals)
• Mitigate social consequences (Specialized social services that would improve the quality of life of people living with a rare disease and their families, such as Help Lines, Respite Care Services and Therapeutic Recreation Programs)
• Increase provision of appropriate quality healthcare (International reference networks of centers of expertise, multidisciplinary care)
• Improve access to the few existing drugs and care (Pricing and reimbursement, healthcare reform)
• Eliminate isolation (Patients and families support and empowerment, networking and community building)

In a letter to U.S. Health and Human Services Secretary Sebelius, the Coalition was able to obtain bipartisan support from Congress urging her to begin the process of reviewing and renewing the federal physical activity guidelines issued in 2008.

The Physical Activity Guidelines for Americans include recommendations of the types and amounts of physical activity that people of any age or ability level should perform to gain important health benefits.  Because of the rapidly evolving nature of our scientific understanding of the benefits of exercise, we believe the guidelines must be reviewed at least every five years, as are federal dietary guidelines.

Governor Brian Sandoval and the State of Nevada have joined the Healing Moves Foundation to celebrate Exercise is Medicine™ Month.  The Governor’s Proclamation is a Call to Action encouraging primary care physicians and other health care providers to include exercise when designing treatment plans for patients.  Regular physical activity is indeed a powerful prescription, with great potential to improve the health of all Americans.

Click on image to see Proclamation

Click and listen to the Healing Moves Foundation’s radio public service announcement!  The PSA was presented to all of the radio stations throughout the State of Nevada and played June through September this summer.  The Nevada Broadcasters Association estimated 600-800 play times per month!  It was a great way to get our message out to encourage people to move a little more for better health.  We would like to thank the Nevada Organ and Tissue Donor Task Force for joining us in our mission and sponsoring this campaign.  

We support and encourage members of Congress to approve  H.R. 3851 in the U.S. House and S.1818 in the Senate, stressing the importance of having regularly updated Physical Activity Guidelines that reflect the latest scientific and translational breakthroughs about the role of physical activity in promoting health and preventing disease. 

To view the current Physical Activity Guidelines for Americans, click on the tab “Exercise Guidelines” at the top of our website.  View the ACSM Advocacy Coalition.

The Healing Moves Foundation attended a news conference and official launch of the PPE Campaign and Coalition for Youth Sports Health and Safety at the National Press Club in Washington, D.C. on May 13, 2010.  The purpose of the campaign is to encourage consistent, thorough and high-quality preparticipation physical evaluations for athletes beginning training and competition in sports activities.  These medical screenings are extremely important to protect our young athletes.  People who appear healthy can often have undetected conditions such as heart problems, diabetes, sickle cell anemia, or concussion complications.  A new study by the American College of Sports Medicine finds overwhelming support for consistent medical screening of young athletes to identify if any of these conditions are present before they hit the playing field.  Currently, there are no national standards when evaluating students.  Each state has a different mandate on the requirements for the PPE.

Athletes, Physicians Urge Adoption of New Medical Screening Tool

Source: American College of Sports Medicine
May 13, 2010

Many more young athletes would be screened for life-threatening or disabling medical problems, if experts who spoke out today prevail. While announcing the updated Preparticipation Physical Evaluation (PPE), proponents urged its widespread adoption and systematic use. Representatives of the six medical societies who developed the new PPE tools teamed up with athletes and other advocates to underscore its potential to keep young athletes healthy.

“The PPE is an essential part of a responsible athletic program,” said former Congressman Jim Ryun, an Olympic medalist and multi-world record holder in track. “These screenings, if done timely and done right, can help prevent the kinds of injuries that can end a career or even a life.”

David Bernhardt, M.D., and William Roberts, M.D., served as co-editors of the newly revised “Preparticipation Physical Evaluation, 4th Edition” (www.ppesportsevaluation.org). “Done properly, these evaluations can detect conditions such as heart problems,” Bernhardt said. “In addition, screening and education can possibly prevent complications related to conditions such as diabetes, sickle cell trait, or concussion. That information can allow youngsters to safely practice or play sports.”

Roberts noted that the new version of PPE reflects the latest medical and scientific knowledge and includes information on ethical and legal considerations and on evaluating athletes with special needs. “While the PPE does screen for potentially catastrophic conditions, we also try to catch conditions that can predispose an athlete to injury or illness,” Roberts said. “And, for some adolescents, these evaluations are their entry into and only contact with the health care system. Doing these screenings across the board — and doing them well — is of the utmost importance.”

The public agrees

There’s no argument from the American people about that, according to a new study by the American College of Sports Medicine. Ninety-six percent of Americans feel it’s important for young athletes to be evaluated by a qualified health care professional before they begin playing sports. A similar majority — 95 percent — believe such screenings must be conducted in a consistent manner across the U.S. (Kelton Research online survey representative of the U.S. population, +/- 3.1 percent margin of error.)

The PPE Coalition

Improving the quality and consistency of pre-competition medical evaluations of U.S. student-athletes is the focus of the newly launched PPE Campaign and Coalition for Youth Sports Health and Safety. Members include medical organizations, sports governing bodies and other groups. At the PPE launch event, they called for widespread adoption of the updated PPE tool. “Requirements for preparticipation evaluations vary widely from state to state,” said James R. Whitehead, CEO of the American College of Sports Medicine. “Inconsistent effort gets inconsistent results, and too many problems are slipping through the cracks. Every young athlete deserves a thorough screening by a qualified medical professional. [The PPE Coalition] is determined to see that everyone can play or practice safely.”

Background

The Preparticipation Physical Evaluation, 4th Edition, is a collaboration of six leading medical societies:

The PPE is the definitive guide for physicians and other health professionals who evaluate athletes before training or competition — an essential tool for promoting the health and safety of athletes. The PPE provides the medical background for decisions by the individual athlete’s physician or the team physician.

The PPE marks important progress in the movement to ensure the health and safety of youth athletes. Other issues include:

The PPE Coalition for Youth Sports Health and Safety is anchored in promoting the consistent use of high-quality preparticipation evaluations for youth athletes. Activities include:

• Website (www.ppesportsevaluation.org)
• Speakers Bureau — Beginning with representatives of the writing team and expanding to offer qualified speakers where needed to build awareness of the importance of the PPE
• Working with policy makers in legislative and administrative bodies
• Building momentum and support for April as National Youth Sports Safety Month (www.nyssf.org/campaign.html)

SOURCE:  American College of Sports Medicine

Founding Partners of the PPE Coalition for Youth Sports Health and Safety:

• American Academy of Family Physicians*
• American Academy of Pediatrics*
• American Academy of Podiatric Sports Medicine
• American Alliance of Health, Physical Education, Recreation, and Dance
• American Amateur Baseball Congress
• American.Association of Cheerleading Coaches & Administrators
• American College of Sports Medicine*
• American Medical Society for Sports Medicine*
• American Orthopaedic Society for Sports Medicine*
• American Osteopathic Academy of Sports Medicine*
• Association for Applied Sport Psychology
• Building Healthier America
• Healing Moves Foundation
• International Society for Sport Psychiatry
• MomsTeam
• National Athletic Trainers’ Association
• National Center for Drug Free Sport, Inc.
• National Council for Spirit Safety Education
• National Council of Youth Sports
• National Ski Areas Association
• Pop Warner Little Scholars, Inc.
• President’s Council on Physical Fitness and Sports
• Road Runners Club of America
• Sanford USD Medical Center
• United States Anti-Doping Agency
• Women’s Sports Foundation

During the month of May, we challenge you to 30 minutes of physical activity each day, no matter what your age or ability!  Together we can rise to the challenge to get active for life—a wonderful, healthier life!

Call your congressman on Tuesday March 30, 2010 and urge them to support the Colorectal Cancer Prevention, Early Detection and Treatment Act. Americans around the country will be calling their legislators as part of the “Congressional Butt-In” a day-long effort organized by C3: Colorectal Cancer Coalition. On that day, constituents are urged to flood their legislators offices with phone calls about important programs which would not only save millions of taxpayer dollars, but more importantly, have a positive impact on the number of colon cancer deaths each year.

Check out these five secrets to stop diabetes from the American Diabetes Association’s vast collection of expert advice. What better time to put these tips into action than during this year’s American Diabetes Association Alert Day?

Also, find out more about Diabetes Alert Day, take the Diabetes Risk Test to determine your level of risk for type 2 diabetes, and learn what steps to take next.

Are you an Apple or a Pear?

Did you know that being an apple rather than a pear shape – more fat around your middle than around your hips – raises your risk of type 2 diabetes? To determine your shape, take a tape measure (a flexible one is best) and place it snugly (not tightly) around your waist. Compare the width of your waist to the number below. If the width of your waist is the same or bigger than the numbers below, you have too much weight around your waist and are at a greater risk for developing type 2 diabetes.

• Men: over 40 inches
• Women: over 35 inches

Have you seen the size of your plate inflate?

As portion sizes have grown in recent years, so has our perception of what is the appropriate amount to eat in one sitting. Even dishes and glasses have increased in size, so a normal-size portion looks inadequate, fueling the urge to fill a plate or glass with extra calories and raising your risk for type 2 diabetes.

Although measuring cups and spoons may be useful at home, they aren’t very realistic when you eat out. A simple trick is to use your hand to help approximate portion sizes.

• A fist = 1 cup
• Palm of a woman’s hand = 3 ounces
• Palm of a man’s hand = 5 ounces
• Thumb tip = 1 teaspoon
• Thumb tip = 1 teaspoon

Source: Copyright © 2009 American Diabetes Association. From What Do I Eat Now?

Have you ever developed gestational diabetes?

Gestational diabetes (GDM) is diabetes that develops during pregnancy. In most cases, these mothers-to-be have never had diabetes before, and then it goes away after pregnancy. But, unfortunately, that’s not always the end of the story.

Once you’ve had GDM your chances are 2 in 3 that it will return in future pregnancies. And women who have had GDM are more than 7 times as likely to develop type 2 diabetes as women who didn’t have diabetes in pregnancy. How can you lower your risk?

• Stay active. Regular exercise can help prevent type 2 diabetes. Plus it can help you lose weight, manage stress, and feel better.
• Breastfeed. If you can, breastfeed your baby. Breastfeeding can provide both short- and long-term benefits to both your baby and to you.
• Talk to your health care provider. Be sure to tell your health care providers that you’ve had GDM.
• Get tested. If you had GDM, you should be tested for diabetes 6–12 weeks after you give birth and at least every 3 years after that.
• Lose weight. Are you more than 20 percent over your ideal body weight? Losing even a few pounds can help you prevent type 2 diabetes.
• Limit fat to 30 percent or less of your daily calories, and watch your portion sizes. Healthy eating habits can go a long way in preventing diabetes and other health problems.

Source: American Diabetes Association’s CheckUp America campaign

Are you a Master Excuse-Maker?

While you may try to exercise often, do you find yourself making excuses when the demands of daily life take hold? By skipping a quick walk or work-out routine, many find the pounds add up. Here are few ways to build exercise into your regular routine and lower your type 2 diabetes risk:

• When working at your desk for an extended period of time, build short breaks into your day.
• Use the stairs instead of the elevator. If need be, take the elevator part of the way and the stairs the rest of the way, then gradually increase the number of floors you climb as you become more fit.
• If safe to do so, park your car at a distant part of the office parking lot so that you can increase the amount of walking you do on your way in. If you use public transportation, get off a stop or two early and walk to your destination.

Source: Copyright © American Diabetes Association. From the “I Hate to Exercise” book

Have you let up on your check-up?

With today’s hectic schedules and daily demands, it’s easy to forget or forgo a scheduled visit with your health care provider. Plus, if you feel a little heavier, more stressed or have been eating less healthy, chances are you’ll want to avoid this check-up more than in years past. But, seeing a healthcare provider on a regular basis is one of the best ways to manage your health, ask for tools to lower your risk, and stop diabetes before it starts.

Be sure to take our Diabetes Risk Test before visiting your health care provider. And, take along these questions and healthy guidelines to make the most of your visit.

• What is the circumference of my waist? (A healthy number is 40 inches or below for men, under 35 inches for women)
• What is my blood pressure?( Less than 120/80 is ideal)
• Will you give me a fasting blood glucose test? (Maintain a schedule of being tested every 3 years after age 45 and ask your doctor to explain the test results and provide tips on how to lower your numbers if need be)
• What is my cholesterol? (Total cholesterol should be less than 200, with LDL levels less than 100 and HDL levels more than 40 mgs for men, 50 mgs for women)
• What are some small steps I can take to be healthier and avoid type 2 diabetes?

Source: American Diabetes Association’s CheckUp America campaign

The poor access to healthy, affordable food in our inner cities and rural communities is partly to blame.  These nutritional wastelands offer families fast food chains and convenience stores, with no opportunity to shop at a supermarket for fruits and vegetables.  While dining in the local restaurant, patrons are frequently offered the one “healthy” food choice:  an entrée salad made with iceberg lettuce and blue cheese dressing, a meal containing all fat and no nutrition.

Recently, the First Lady vowed to help the 23.5 million Americans – including the 6.5 million children – who live in these food deserts.  One of her goals is to eliminate food deserts completely throughout America in the next seven years.  To achieve these goals, more grocery stores that offer healthy food need to be built in these underserved communities.