philanthropy
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5 Organizations that pull at my heart

Valentine’s Day is the day we all think about “love” and those who we have fond feelings for. I’d like to dedicate this post to 5 organizations whose “love” has touched me one way or another.

my babies1. Preeclampsia Foundation: Both of my daughters were born prematurely due to the fact that I had sever Preeclampsia. Unfortunately 23 years ago I did not know of this organization but now for patients who are faced with this there is a wonderful resource.

The Preeclampsia Foundation is an empowered community of patients and experts, with a diverse array of resources and support to help you have the best possible pregnancy or to help you navigate the questions you’ll have if you don’t. We provide unparalleled support and advocacy for the people whose lives have been or will be affected by the condition – mothers, babies, fathers and their families.


Sarah supporting WalkAmerica for the March of Dimes

2. March of Dimes: After delivering 2 preemies 4 and a half years apart. I can truly appreciate this organizations work to help preventing birth defects and prematurity.

President Franklin Roosevelt’s personal struggle with polio led him to create the National Foundation for Infantile Paralysis at a time when polio was on the rise. Better known as the March of Dimes, the foundation established a polio patient aid program and funded research for vaccines developed by Jonas Salk, MD and Albert Sabin, MD. These vaccines effectively ended epidemic polio in the United States.

Its original mission accomplished, the foundation turned its focus to preventing birth defects and infant mortality. The March of Dimes has led the way to discover the genetic causes of birth defects, to promote newborn screening, and to educate medical professionals and the public about best practices for healthy pregnancy. We have supported research for surfactant therapy to treat respiratory distress and helped initiate the system of regional neonatal intensive care for premature and sick babies.

Since 2003, our fight to save babies has been strongly characterized by our Prematurity Campaign. The rising incidence of premature birth has demanded action, and the March of Dimes has responded by initiating an intensive, multi-year campaign to raise awareness and find the causes of prematurity.


Hadley and her buddies at Halloween Dance

3. Best Buddies: I can’t say enough wonderful things about this organization. Every month when Hadley comes home with a note that she is going to have a Best Buddies event at her school that week a smile overcomes her. She has met some very special friends through this club.

Best Buddies is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).Best Buddies is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership.

Founded in 1989 by Anthony Kennedy Shriver, Best Buddies is a vibrant, international organization that has grown from one original chapter to almost 1,500 middle school, high school, and college chapters worldwide. Best Buddies programs engage participants in each of the 50 United States, and in 50 countries around the world. Best Buddies’ seven formal programs – Best Buddies Middle Schools, High Schools, Colleges, Citizens, e-Buddies, Jobs and Ambassadors – positively impact nearly 700,000 individuals with and without disabilities worldwide. Best Buddies volunteers annually contribute, at no cost to their communities, support services that equate to more than $164 million USD.

4. Shane’s Inspiration: After creating and running Hadley’s Park for about 10 years, I had to hang up my hat for family reasons. Through our work we met another organization in the beginning of their existence with a similar mission. Although they were clear across the country (California) their vision and mission was on par with ours; all children should have a safe and fully inclusive place to play. To this day Shane’s Inspiration works to keep that dream alive, and I cheer for them daily!

In 1998, Shane’s Inspiration gave a gift to thousands of Los Angeles children through the creation of an environment where all children can play together at the highest level of their ability. With the support of visionary community leaders, Shane’s Inspiration created the first Universally Accessible Playground in the Western United States and the largest in the nation: “Shane’s Inspiration.” Located in Griffith Park, “Shane’s Inspiration” provides two acres of fully accessible, sensory-rich and physically challenging equipment.

Since the opening of our flagship playground, Shane’s Inspiration has helped raise millions of dollars to develop over 40 Universally Accessible Playground projects throughout Southern California and as far away as Sri Lanka. We also reach over 2,600children each year through transportation, education and community outreach programs.

5. American Heart Association: Since starting my healthy makeover last year I understand the importance of having a healthy heart! Heart Disease is the number 1 killer amongst women and I wanted to lower my odds and began my journey last year. February is American Heart Month. Their website has a wealth of information, so stop by!

What organizations do you hold near and dear to your heart?

Thanks and Giving


photo credit: St. Jude’s thanks and giving website

Each year as I look at my two beautiful daughters grow and watch them blossom into fine young ladies, I reflect about just how lucky we are to have both of them happy and healthy.

My girls were both born prematurely at 34 weeks due to pre-eclampia/toxemia which I somehow managed to get twice.

Many of you know Rebeka is now a senior in college and ready to graduate and jump into the world. My other daughter Ainsley was not as fortunate; when she was six days old she suffered a bilateral grade 2 intracranial hemorrhage which left her with a seizure disorder and cerebral palsy. Her life is much different than Rebeka’s however; we have learned and grown through understanding Ainsley’s disability. I thank god everyday for Ainsley and all that we have learned from her. I suppose around the holidays we tend to get a bit sentimental and think about all of our blessings and try and help those less fortunate then ourselves.

It is because of this that we have chosen to step up to the plate so to speak and help St Jude Children’s Hospital. I know many of you have heard of St Jude’s but this is a short paragraph or two from the St. Jude’s Children’s Hospital about their background…

St. Jude Children’s Research Hospital, founded by the late entertainer Danny Thomas, is one of the world’s premier centers for the research and treatment of pediatric cancer and other catastrophic childhood diseases. Children from all 50 states and around the world have come through the doors of St. Jude for treatment, and thousands more have benefited from the research conducted at St. Jude—research that is shared freely with the global medical community.

Working together, St. Jude physicians and scientists have pioneered treatments that have helped push the overall survival rates for childhood cancers from less than 20 percent in 1962 to 80 percent today. The survival rate for the most common form of childhood cancer, acute lymphoblastic leukemia, has risen from just 4 percent in 1962to 94 percent today.

That was the vision of Danny Thomas when he founded St. Jude, thanks to an answered prayer to St. Jude Thaddeus, the patron saint of hopeless causes. “Show me my way in life,” Danny prayed as he sought direction in his life, “and I will build you a shrine.”

Danny’s prayer was answered, and he soon became one of America’s most beloved entertainers. Even after he achieved fame and fortune, Danny always remembered his pledge to St. Jude.

Today, St. Jude Children’s Research Hospital stands as the embodiment of that pledge and has served as a symbol of hope for children stricken with catastrophic diseases since opening in 1962.”

Here are a few quick facts:

* It is amazing that all patients accepted for treatment at St. Jude are treated without regard to the family’s ability to pay. This is what is so critical about this hospital; it services so many children from all across the country whose families cannot pay, or they do not have health insurance for one reason or another.

* St. Jude covers the cost of everything—food, travel and lodging for patients and a family member.

* In 2009, Parents magazine named St. Jude the No. 1 pediatric cancer care hospital in the country, based on the magazine’s survey of more than 75 children’s hospitals nationwide.

I am asking you to look at your own healthy children and give thanks that they are healthy by helping those who aren’t. Please take a moment to our team page and give $5.00 today instead of your daily latte, it will not only good for the hospital but it will be good for your heart!

One day… all babies will be born healthy

Twenty one years ago, I was a young scared soon to be young mom, who had been lying in the hospital for almost six weeks due to complications from Preeclampsia/Toxemia which was only getting worse. I didn’t understand what this was or why this was happening to me, and no one took the time to explain anything other than the fact that my blood pressure was going up, and I was spilling protein in my urine, (whatever that meant) and just before my water broke I gained 5 pounds overnight of I believe fluid; I wasn’t eating a lot because at the same time I was suffering from major gallbladder attacks so I couldn’t eat anything with fat or I had an attack, so there wasn’t to much I was eating; therefore the 5 pound weight pain was just scary. My hands looked like I was wearing baseball mitts and my legs and feet were so swollen I couldn’t even see my ankles. I knew that this was just wrong and I wanted to know that my baby and I were going to be OK. All I was told was the “cure” of my Toxemia was to deliver the baby.

The evening after the huge overnight weigh gain, my water broke at 34 weeks. I was told that it would be risky for the baby, perhaps his/her lungs would not be developed enough, but there was no way to stop the pregnancy at this point. This was my body’s way of saying “get this baby out of here.”

Twenty five hours and forty minutes later Rebeka was born via an emergency c-section. I don’t remember much of her birth since I was so exhausted from the Pitocin-which was used to speed up my contractions, and Magnesium Sulfate, which was used to “stabilize” my blood pressure which was like a roller coaster, going up and then plummeting to the point where they needed to give me Epinephrine to bring it back up. My body was going through a huge amount of emotional and physical anxiety, but I do remember when they pulled her out, and there was “nothing.” No cry and then panic hit the room. My poor husband didn’t know which way to turn, to me, or to our newborn daughter whose future which looked quite grim. They rapidly laid Rebeka down on a board and used Velcro straps on her arms and legs; that is all I remember before I blacked out.

When I came to I was in the recovery room and Geoffrey was sitting next to me. I remember I couldn’t move, and of course I asked about the baby. Where was she? How was she? How much did she weigh? What did she look like? The next 24 hours Rebeka showed us what a fighter she was, within that time the tiny 4 pound baby that was born not breathing who was resuscitated and ventilated was pulled off the ventilator and breathing on her own.

In the mean time, we were told by all that she would most likely be “blind, deaf, retarded, and probably never be able to live on her own.” We were devastated. How could this beautiful little baby be born and be such a “fighter” to only have these prognosis’s “thrown” on us? Well they couldn’t have been more wrong. Rebeka has grown to be a very intelligent and well versed 21 year old lady.

However now believe that the powers “above” were just “testing the waters.” Three and a half years after Rebeka was born, I went through the same ordeal of a “pregnancy” with the same lousy complications, minus the gallbladder issues because six weeks after my first section, I had my gallbladder removed. (Back to back surgeries not recommended by me!) In any event, the same things started happening but I was much more aware of what was going on and just a little scared about the same thing happening again.

And at 34 weeks after a month long stay in the hospital Ainsley was born. When things went to that “bad place” on the radar we opted it was time to get her out and scheduled a section for the first availability of the Operating Room. The next morning I was wheeled in and prepped for surgery. This time the section went much better and thank god, when they pulled her out, I heard that loud cry! There was no “drama” no board with Velcro, they wrapped her up and carried the little 3 pound munchkin to the NIC unit to eat and get bigger and go home and start her life. Unfortunately when Ainsley was 10 days old she suffered an intraventricular hemorrhage which changed her life and certainly all of ours. And then I remember what “they” had warned us about Rebeka. What was going to become of our little Ainsley? How would we live with a disabled child? What would that mean for her? What would that mean for us?

Our family has come a long way in those 21 years, we have learned to jump thru hoops and we have overcome a lot in coming to terms with having a disabled child. We have even become advocates in the disability community! I share this short snippet of our family’s history with you in honor of March of Dimes Prematurity Awareness Month.

And ask that you take a moment to see how you can get involved. If nothing more become informed about premature birth. Although I could not avoid mine there are things women can do.

The March of Dimes mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. They carry out this mission through research, community services, education and advocacy to save babies’ lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birth weight.

Please share this info with anyone who you know who is pregnant and make sure that they are getting prenatal care. I am always happy to talk to anyone who might need help, even though I am not a doctor and do not claim to have any medical training, I have “been there and done that,” and I am happy to reach out and share with anyone who might need an ear or a hand to hold, even if it is through the Internet!

Behind every word, there’s a story. What’s yours?

Every once in a while a story comes my way about a disability or a disease that I believe is one that I would like to help raise awareness of. As I was watching TV yesterday I saw a commercial about diabetes and decided this was one such disease that is all too often about statistics and too seldom about the hearts and minds of the thousands of people it touches. I would like to lend my voice or at least my typing to. I found the below information on diabetes interesting from the OneTouch® website.

Richard R. Rubin, Ph.D., C.D.E., is an associate professor of medicine and pediatrics at Johns Hopkins, and he is the co-author of “Psyching Out Diabetes: A Positive Approach to Your Negative Emotions,” “Sweet Kids,” and “The Johns Hopkins Guide to Diabetes.” He also has written extensively on the effects of diabetes education, psychological problems associated with diabetes and techniques for counseling people with diabetes as well as lived with a sister and son who developed the disease.

Dr. Rubin spent several years researching people with diabetes and he came up with what he calls “A journey toward easier and more effective diabetes management based on mastering five specific skills.”

In his research he explains that each diabetes success story is unique, but when he thinks of all the success stories he has heard over the years, it is clear that there is a specific set of skills that make for easier and more effective diabetes management. He asks, what do people who live well with diabetes have in common?

They tend to be good planners.

They get help when they need it.

They manage stress well.

They avoid diabetes burnout.

They maintain their motivation.

The skills that spell success:

Plan to succeed. Making changes to live healthier takes work—hard work with no vacations. That’s why a critical—and often overlooked—first step toward living well with diabetes is knowing exactly why you are doing all that work. Some reasons might sound good, but aren’t really good enough to keep you motivated, like “my doctor told me I should,” or “I know it would be better for me.” I have found that people stay motivated longer when their reasons are more personal, more specific, and more positive: “I want to be around to see my grandson get his high school diploma,” or “I want to still be working in my garden when I’m 90,” or even “I need to stay healthy to enjoy whatever life has in store for me.”

Planning to succeed also means being realistic; “slow and steady” definitely wins the race when it comes to living well with diabetes, or even preventing it in the first place. One of my research studies found that people at high risk for developing type 2 diabetes who lost just 10 pounds and kept it off cut their risk of developing the disease during the study period (about 3 years) by 58 percent! This powerful “small steps, big rewards” message also applies to people who already have diabetes—lowering your weight, or your blood glucose, blood pressure, or cholesterol levels just a little bit can make a big difference in your health. The American Diabetes Association has a new service called Diabetes PHD that lets you enter personal health information and see how much healthier you could be—and how much longer you could live—with small changes in your blood glucose, blood pressure, and cholesterol levels. To try this service, go to www.diabetes.org/diabetesphd/default.jsp.

Get support when you need it. Diabetes is a family disease in many ways. Your diabetes affects the people who love you, and their actions affect how you manage your diabetes. Are you getting enough support? Or are you instead getting too much “support” from some people, who seem to have joined the “diabetes police”? Do you know how to locate help for improving your diabetes management from other sources, like the Internet, magazines, books, or education classes?

Manage stress well. Some people are really good at managing the stress of life with diabetes. They know how to resist tempting desserts without feeling deprived, they manage low blood glucose reactions without much fuss, and they seem to cope well with all the other demands of their disease, large and small.

These people tell me there are two keys to success when it comes to stress management—maintaining your sense of hope, and maintaining your sense of humor. Hope and humor are the closest things to magic in the world. Use the power of hope and humor to lift your spirits and improve your health.

Avoiding “diabetes burnout.” No matter how well you manage the stress of life with diabetes there will be times when you feel down about it. That’s normal, even inevitable, given how demanding diabetes can be.

If your diabetes blues linger, you might be suffering from “diabetes burnout” or even from depression, serious conditions that often require help to resolve. Fortunately, both conditions are treatable. Good diabetes education can often relieve diabetes burnout, and counseling or medication can relieve depression. Effective treatment of these conditions can also improve blood glucose control.

Maintain your motivation. Diabetes lasts a lifetime: 24 hours a day, 365 days a year. (Or 366 days on Leap Year, as a young patient pointed out to me.) So your approach to managing diabetes has to last a lifetime as well. But how do you maintain your motivation, day-in and day-out, 365—or 366—days a year, every year for the rest of your life?

So that’s the plan, a journey toward easier and more effective diabetes management based on mastering five specific skills.

I hope this helps! If you want to become more involved, join the Global Diabetes Handprint. OneTouch® the company behind keeping one’s diabetes under control believes that when we all speak together, our voice will be heard.

The inspiration for The Word in Your Hand™ Project was found at TuDiabestes.com® and OneTouch® joined in and created the “Global Diabetes Handprint.” It is thru this that everyone can raise awareness of the disease.

By writing a word on your hand expressing your feelings about diabetes and sharing your story behind it, you’ll become part of the global community that puts a human face on diabetes for the entire world to see.

OneTouch® will donate $5 to one of two diabetes charities for every hand that comes to them. Their goal is to donate $250,000 by June 30th.

They could use a hand! Please send in yours. http://www.diabeteshandprint.com/

A chance to win Inspiration in a Cup

I sat down to write a new post this morning after checking out other people’s blogs and leaving my usual “love” on them and I came across a blog which brought my attention to a coffee company called get the bean dot com which will deliver right to your door. I love a good quality cup of “joe” in the morning and so this peaked my interested and they were having a giveaway which you can find out more at Get the bean, but more so I am all about inspiration and people and how they take a lemon and make lemonade and that is just what this company is about.

It started with Meaghan: (ok this was taken from their website)

Meaghan was a young, healthy vibrant 28 year old attending law school in the winter of 2006. During her second year of classes she began feeling ill. She went to numerous doctors looking for help. Each doctor suggested it was all in Meaghan’s head; maybe she was depressed, mentally ill or over-stressed. Because she was young and had always been healthy the doctors assumed nothing could be seriously wrong. Enduring extreme pain, bleeding and exhaustion Meaghan kept returning to her doctors looking for help. Still no one did anything to address any of her health issues. Meaghan’s symptoms became worse with each passing day. Because no one believed she was ill she continued to attend classes and tried to live a normal life. Eventually the pain became so unbearable she drove herself to the ER.

The doctors at the Emergency Room also suggested Meaghan’s pain was in her head. However, due to the symptoms she complained of they were required to give her a CT scan. The CT scan showed Meaghan’s pain was NOT in her head. She had a large tumor on her cervix. The tumor had grown so large it had crushed her ureters causing her kidneys to rip open. In February 2007 Meaghan was finally diagnosed with advanced cervical cancer, stage 3b. The same doctors that had assured her she was fine were now telling her and her family that she would not survive.

Meaghan decided not to give up but rather to fight. After two weeks of hospitalization and blood transfusions Meaghan was flown to Dana Farber Cancer Institute in Boston Massachusetts. Upon arrival the doctors were both amazed and horrified. Amazed at this young woman’s spirit and horrified at the pain she was forced to endure. Teams of doctors attended Meaghan in an effort to diminish her pain and save her life. Meaghan underwent chemo, internal and external radiation as well as numerous surgeries. With only a 20% chance of surviving Meaghan and her doctors fought hard against cancer. In July 2007 she won her battle and was cancer free.

Although she won her fight Meaghan continues to struggle against the secondary effects of her treatments. Cancer has changed her life forever. Meaghan returned to law school and is set to graduate in December 2008.

Without the love, care and attention Meaghan received at Dana Farber Cancer Institute she would not have survived. Because of this Meaghan has dedicated herself to raising awareness and supporting Cancer Institutes. To learn more about Meaghan and her story visit her blog at www.cancerlost.blogspot.com

Now wouldn’t you rather get your coffee from this great woman rather then that place on every corner? wink wink! To register to win the free coffee go to get the bean. And drop by here anytime with your cup of “joe” and let me know what your favorite flavor is…