Protect the sick children

Personal politics aside, I felt a lump forming in my throat as I read the headlines last week describing how Republicans in both chambers of Congress took the first major step toward repealing President Obama’s signature Affordable Care Act (ACA), a.k.a. Obamacare.

I knew the lump was because of my daughter Eliza. Three years ago, in January 2014 my husband and I made one of the toughest decisions of our lives as we chose to put the life of our then three-month-old daughter in the hands of a pediatric cardiothoracic surgeon in an operating room at Children’s Hospital Los Angeles.

Eliza was born with a large VSD, a hole in the wall separating the two lower chambers of the heart. It is considered complex congenital heart defect which often needs to be repaired with surgery. In Eliza’s case, she needed open heart surgery as an infant—with all the bells and whistles included in an adult open heart surgery such as splitting apart her breastbone, connecting her to a heart-lung bypass machine, stopping her heart for the surgery, sewing the hole closed and then restarting her heart, taking her off by-pass and finally sewing her back up.

Thankfully, my husband’s job provided very good health insurance benefits; however, several of the key provisions of the Affordable Care Act eased the burden on our family and ensured that we could get the best care possible for our daughter.

After our experience, I feel solidarity with families who have kids born with serious birth defects, kids with cancer, and kids with other serious medical conditions, especially those who are now at risk of being without insurance or the full support and protections we had.

For the sake of these families, I ask Republicans in Congress and the President-elect to stop moving so quickly to scrap the ACA without putting forward an alternative plan that immediately covers pre-existing conditions. I am heartbroken thinking of how other families with very sick kids will cope without continuity of coverage. If Congress isn’t more prudent, thousands of very sick kids could fall through the cracks just when they need surgery and advanced care—even if it only takes a few months for a Republican plan to be voted on and then implemented. That’s unconscionable.

Right now there are thousands of kids in the hospital or being born in the USA with life-threatening and serious health conditions who need continuity of care.

Here are some statistics relating to sick kids in the USA:

500,000 preterm babies are born each year in the USA. Many need advanced NICU care. 

-Birth defects affect one in every 33 babies (about 3% of all babies) born in the United States each year.

-Congenital heart defects affect about 40,000 births per year in the United States and about 25% of babies with a CHD have a critical CHD which generally requires surgery or other procedures in their first year of life.

Each year 15,780 children between the ages of birth and 19 years of age are diagnosed with cancer in the USA.

-There are currently about 15,000 kids age 18 and under living with cystic fibrosis in the United States.

About 208,000 Americans under age 20 are estimated to have diagnosed diabetes. 

That is just a sampling of the serious conditions facing thousands of kids in the USA ever day. If the ACA is repealed without a replacement or a stop-gap in place, what happen to the very sick kids with whose parents are among the 20 million Americans who currently belong to ACA Marketplace plans? Will the end of Obamacare destablize other health care plans or benefits? Will hundreds of families face the worst case scenerio of being denied care or being hit with bills for tens of thousands of dollars? Those outcomes would be unacceptable.

As of January 2014, the ACA also assured that individuals enrolled in Marketplace insurance plans offered a set of essential health benefits, including many that we used heavily during my daughter Eliza’s first six months of life. It insures coverage for hospitalizations, emergency services, pregnancy, maternity, and newborn care, pediatric care, laboratory services and prescription drugs. These are all essential coverage areas for the replacement plan as well.

Our elected leaders need act NOW to develop and put in place a plan to ensure continued coverage to kids and adults with pre-existing medical conditions. In the life and care of a seriously ill patient, weeks and months make a huge difference.

In our lives just three months made a world of difference. Prior to surgery, my daughter became exhausted every time she drank milk and she was in the 5th percentile for height and weight. And she was at risk for life-long lung damage and growth and developmental delays. Today Eliza is 100 percent healthy—she’s a talkative and spunky 3 year-old in the 85th percentile for height with no restrictions on her activity level and no cognitive or behavioral delays.

Amid the inflated rhetoric and hasty actions to undo Obamacare, ALL of our elected leaders have a serious responsibility to make sure that their political agendas don’t cause very sick kids to fall through the cracks.

Please join me in calling our elected officials to ask that members of Congress and the President-elect to do the right thing. We need to speak up for those who are too sick and too young to call for themselves. Here’s a link with contact information for Congress.

PR Tips For Breaking Non-profit Websites Out of Brochure Mode

Is it just me or is it very noticeable when you come across a website that’s essentially brochureware? Lately, I’ve noticed that some of my favorite local non-profits have very static websites and in some cases they list information that’s clearly a few years out-of-date. I know that many small non-profits don’t have dedicated communications professionals, so here are some not too time consuming ways to keep websites up-to-date and dynamic.

  • Do a yearly review of your website to determine if there is any basic information that’s out of date. Update functional items like hours of operation and dates of events for the coming year. Consider also using this opportunity to refresh outdated photos and update any feature type content.
  • If you don’t have one, consider adding a blog as a freestanding page on your website. While ideally someone should “own” the blog and make regular posts, active non-profits can use a blog like a continually updating newsletter. You can publicize events, acknowledge milestones, and post updates and photos from activities. By using free blogging software blog posters don’t need to learn HTML so adding new items is a breeze.
  • Add a Twitter feed to your website and Tweet regularly. Don’t forget to re-Tweet you fellow non-profits and news items relevant to your area of focus.
  • Consider adding a feature story with a photo that you change periodically to one of your website’s main landing pages. Change it monthly if you are ambitious or quarterly if you don’t have communications support
  • If your website was literally created as brochureware, do an inventory to determine whether it’s missing any of the key functions that an updated website can provide. Non-profit websites can and should offer the following: a compelling statement of the organization’s purpose, a description of the community served by the organization (this is a great opportunity for feature stories), the details of upcoming events, organizational history and leadership information, and a call to action which at the least gives up-to-date information about how to get involved. Update content or add pages to at least cover these areas and customize your website further to meet your organization’s needs.

10 Inspiring Martin Luther King, Jr. Quotes

  1. “I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.” –“I Have a Dream” speech
  2. “Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly.” –Letter from a Birmingham Jail
  3. “I refuse to accept the view that mankind is so tragically bound to the starless midnight of racism and war that the bright daybreak of peace and brotherhood can never become a reality.” –Nobel Price Acceptance Speech
  4. “Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”
  5. “Our lives begin to end the day we become silent about things that matter.”
  6. “Nonviolence means avoiding not only external physical violence but also internal violence of spirit. You not only refuse to shoot a man, but you refuse to hate him.”
  7. “A nation that continues year after year to spend more money on military defense than on programs of social uplift is approaching spiritual death.”
  8. “To save man from the morass of propaganda, in my opinion, is one of the chief aims of education. Education must enable one to sift and weigh evidence, to discern the true from the false, the real from the unreal, and the facts from the fiction.” –The Purpose of Education
  9. “Faith is taking the first step even when you don’t see the whole staircase.”
  10. “Like the ever-changing cycle of the seasons, life has the soothing warmth of its summers and the piercing chill of its winters. And if one will hold on, he will discover that God walks with him, and that God is able to lift you from the fatigue of despair to the buoyancy of hope, and transform dark and desolate valleys into sunlit paths of inner peace.”

Many of Dr. Kings quotes, speeches and sermons are in the public domain, but the book “Strength to Love” provides a more comprehensive collection of his sermons.

13 Small Ways to Be Healthier in the New Year

For the past several years, getting healthier has been an ambitious New Years resolution that quickly falls by the wayside . So, this year I decided to try several small steps to get healthier rather than a grandiose plan. My favorites are below and I’ve been doing pretty well with #1, #3, #5, #7 and #11.

  1. Make your latte “skinny.” A regular vanilla latte at Starbucks has 35g of sugar and 6g of fat but when ordered “skinny” it has 0g of each according to the coffee chain’s website (non-fat milk and sugar-free syrup are used).
  2. Take the stairs instead of the elevator. Walking up 4 flights of stairs burns about 40 calories.
  3. Take a multivitamin daily and maybe a calcium supplement. Vitamins can plug nutrition gaps in your diet, and they offer measurable benefits like boosting bone density in women who supplement calcium and vitamin D.
  4. Get a massage. It’s not a luxury if you are experiencing recurrent stress, pain or muscle tension.
  5. Drink a green smoothie or green juice 2-3 times per week. Yes, berries and bananas are delicious, but add some raw spinach and lemon juice to cut the bitterness and you’ll be boosting your folate intake as well as vitamins A, B-6, K and riboflavin.
  6. Go to bed 30 minutes earlier and then push it back to 60 minutes earlier. Benefits include better energy and focus, reducing stress and protecting against diabetes, cancer, inflammation and heart disease. (A 2008 study showed that adults who slept for 7 hours a night had a 33 percent lower chance of having calcium deposits build up in their arteries than adults who slept for only 6 hours).
  7. Take a brisk walk outdoors during your lunch hour or after you get home. Not only does it burn calories and boost endorphins and energy, but you’ll also absorb some extra Vitamin D.
  8. Give meditation a try. A 5 minute daily meditation can provide significant stress relief.
  9. Join the “Meatless Monday” crowd. Sure it’s a fad, but research suggests that red meat and processed meat consumption increases the risk of colorectal cancer while plant-based diets, particularly those low in processed meat, can reduce your risk  as well as your risk of type 2 diabetes.
  10. Wear sunscreen daily, without fail. Sunscreen has been proven to decrease the development of skin cancer and also helps to prevent facial brown spots and skin discolorations.
  11. Cut back your sugary food intake. We all love donuts, cupcakes, candy, and other treats made from refined sugar, but they shouldn’t be a daily indulgence. The American Heart Association suggests that Americans should not get more than 100-150 calories from added sugar i.e.  sugary foods or beverages per day. However, on average Americans consume 335 calories from added sugar daily, the equivalent of 22 teaspoons of sugar.
  12. Add one serving of fruits or vegetables to your diet daily. Grab an apple at lunch time or a handful of carrots for a snack.
  13. Drink less soda, even if you drink diet soda. Yes, diet soda is healthier than regular soda but recent research has uncovered links between diet soda and conditions like type 2 diabetes, metabolic syndrome, hypertension and stroke.