Hearts of Steel Foundation

Hearts of Steel Foundation “Dedicated to supporting families suffering from Congenital Heart Defects through awareness and financial relief.” A congenital heart defect is an abnormality present at birth that affects (approximately) 1 in 110 births, making it the #1 birth defect across the globe. CHD is the leading cause of birth defect deaths in infants and kill twice as many children than all childhood cancers combined. 50% of those born with a CHD will need at least one invasive surgery in their lifetime. As of today there are still no known causes or cures for this devastating birth defect, which means this is a life-long battle for families afflicted. The following is a list of our board of directors: Natalie Alexander: Founder/President. Member of the Parent Advisory Counsel at Children’s Hospital at Saint Francis, member of the Community Leadership Team with American Heart Association, registered volunteer with the Chase Morris Foundation and registered Volunteer with the Children’s Hospital at Saint Francis. Speaker for NORD (National Organization of Rare Diseases) 2002 Social Chair of the Kappa Kappa Gamma Fraternity at Oklahoma State University. Ben Alexander: Founder/Vice President. Creator of the Oklahoma Heart Parents network, Executive Chef who donates meal drops to parents and staff at Children’s Hospital at Saint Francis, Veteran of Foreign Wars (2 tours), head of (philanthropy) catering with the McNellie’s Group and host for complimentary cooking classes for local children. Proud father of two cardiac children. Erin Atwood: Secretary. Juris Doctorate with a Native American Law Certificate from the University of Tulsa May 2014, graduated with recognition for community service hours performed and a CALI award in Native American Natural Resource Law. Licensed Attorney since September 2014. Completed an internship with Legal Advocates of Indian Country August – December 2013 During that time, among other tasks, worked with the Kaw Nation and completed Grant Training Certification for Phase 3 Training on the Tribal Justice System Planning Process 2013, Bachelor of Arts in English from Northeastern State University December 2011. Did an internship in editing grant studies and proposals working under a licensed attorney and professor of Criminal Justice, Vice-President of the Native American Law Student Association-TU Chapter 2013-2014, Secretary 2012-2013. Responsible for membership, planning events, and outreach on native issues at TU, Clerk of Phi Alpha Delta Legal Fraternity-TU Hardy Chapter 2013-2014 Nancy Foland: Treasurer. Bachelor of Science in Business Administration with a major in Finance from the University of Tulsa. A former banker of 8 years. Volunteer coordinator for 3 years, is serving now as Treasurer of the Kappa Kappa Gamma Fraternity and the Kappa Kappa Gamma Foundation for a total of 5 years. Registered volunteer with Junior Philharmonic, member of the Junior League chapter, Meals on Wheels volunteer and a church elder. Jenny Campbell: Committee Chair. Independent travel agent for Mickey Guru Travel Company for 3 years, 12 year Operations Manager/book keeper for Savastano's Pizzeria, active member in the community trying to help others in need especially children and their families. Provide food drops to families in need at local hospital's and homes. Organized/hosted Heart Rally for our Super Sawyer and also Fight Madd for Maddi which were both charitable benefits. Ran silent auctions for both charity events and orchestrated fundraising tactics. Wife and mother of 4. We have several main goals to achieve in the next one to three years: 1. GOAL: To raise money through the generosity of donors OBJECTIVES: a. Host an annual fundraising gala to raise large donations b. Apply for grants and other available funding from other sources. c. Accept private funding and donations. 2. GOAL: To use raised funds for financial support to families suffering from CHD OBJECTIVES: a. Provide an application process for cardiac families to request bill pay, travel expenses, lodging expenses, clothing necessities or childcare costs in the event of a medical hardship. b. Receive proof of hardship for approval c. Board members will vote to approve all applications before financial requests will be granted. d. Once approved, families will receive appropriate financial grants and support for a pre-determined amount of time OR as a one-time gift. 3. GOAL: Create awareness in the medical and public communities about Congenital Heart Defects. OBJECTIVES: a. Create a presentation that can be easily shown at clinics, schools, conferences, and any other venue that would allow viewing of the information about Congenital Heart Defects. b. Consistently updating the Hearts of Steel website to have completely updated information on CHD, to include: news, events, available research, medical facilities that can aid in care of cardiac patients, medication information and links to other publications. c. Create a quarterly newsletter to send out via e-mail, or mail to local businesses and donors so they can see recent awareness material. d. Attend and participate in conferences that we can share our organizational information. Summary of Market Research: • Through social media our organization has been able to reach hundreds of families in regards to the needs of congenital heart defect patients and their families. We have surveyed, polled and studied to develop the best possible plans for providing support. • CHD is a lifelong disorder that requires a multitude of specialists, physicians, medication and top notch insurance to ensure survival. The costs of these things are staggering, Oklahoma currently has no other foundations doing direct bill pay and financial granting for this community. • The #1 birth defect in the world is surprisingly underfunded. The cardiac community has expressed a unanimous desire for more public awareness for CHD and the affect it can have on the family unit. • The divorce rate for parents who care for a sick/disabled/birth defect child is 20% higher than the average married couple. The primary causes listed are financial struggle and emotional trauma. Our goal is to help lift some of this strain and provide help with medical expenses. • Families who do not qualify for Medicaid often have to pay insurance premiums > $700 per month to have plans suitable for surgeries and specialty care. • Almost half of all children and adults with complex congenital heart disease have neurological and developmental disabilities. In addition, many cardiac patients have feeding and gut issues which require feeding tubes and special equipment to accommodate. This means more physicians, more medications, more developmental therapies and more financial output. • Cardiac patients often have siblings at home that also need care, attention, medical help, clothing, childcare, school supplies and hot meals. Our organization will also provide necessities for the siblings who often have to take a back seat to their critically ill siblings, this survey had very positive feedback as a communal desire. • Many cardiac patients in Oklahoma have to seek medical attention in other states, as Oklahoma does not have a transplant grade facility. This means that hundreds of families are transported to other cities, forcing them to leave their jobs and often other children behind. The cost of this type of care is dramatically higher and can lead to termination of medical benefits due to job loss. There is a desperate need for a resource that can relieve some of the travel expenses that accompanies critical cardiac care. • Medical claims are a huge battle for many patients in critical care. Parents are often battling insurance companies for hours weekly in an effort to have procedures and medications covered. Many end up paying large sums of money out of pocket due to denials. • The founders of this corporation are heart parents themselves. Having spent 100+ days in 3 different hospitals (across 3 states) over the first 14 months, they experienced most of these statistics for themselves. In an effort to give back, they created this foundation to ensure other Oklahoma families have the resources to keep their families afloat. The family raised money to provide Christmas for two local families and all of their children in addition to doing frequent meal drops at the Children’s Hospital in hopes of improving the quality of (hospital) life. The primary goal of this entire operation is to make CHD life a little more bearable for those under siege, whether it be a hot meal or having their mortgage paid while they fight for life.