Preserve Our Legacy joins Global Grind and others for Toy & Book Givaway

P.O.L. to host Bone Marrow Drive at The Synergy Career Conference at Brooklyn Marriott - 11/22/13

The Synergy Entertainment Career Conference

Brooklyn Marriott 

333 Adams St., Brooklyn, NY 11201 

Friday, November 22nd 2013

 6:00 pm - 9:30 pm

Tickets: Students $15.00, General $25.00, VIP $50.00

Tickets can be purchased: www.wearesynergyentertainment.com

Preserve Our Legacy, Inc. has created a niche in the music industry by implementing “edu-taining” information with bone marrow registration during industry events.  Synergy Entertainment will be hosting a career conference with resources available for entrepreneurs pursuing their dreams.  A portion of the proceeds will benefit four (4) organizations.  The bone marrow drive will be hosted during the event. 

For more information about Preserve Our Legacy please contact 877.778.3623 ext.702, Shana Melius. For more Media Inquiries or information about Synergy Entertainment email: wearesynergyentertainment@gmail.com.

Synergy Entertainment

In 2013, Founder, Shyra Johnson, an entrepreneur, started Synergy Entertainment to ignite the passion back for people to pursue their career goals.   Synergy Entertainment ignites a fire, encouraging professionals to achieve their dreams and build bridges within the multifaceted entertainment industry throughstrategic partnership and networking.  Companies and attendees work in television, film, music, journalism, politics, radio,design, technology, media, education and gaming industries.  “As an entrepreneur I faced doubt, discouragement and distractions.  I just kept God first and persevered through the many obstacles that came my way.  Therefore, I reach out to individuals within the industry that could provide additional insight.  I wanted to help others individuals and encourage them that dreams are possible by providing them with beneficial resources, hence, The Synergy Entertainment Career Conference”, says CEO Shyra Johnson.  This event will include a panel discussion for industry veterans such as Music industry mogul Meda Leacock, VH1 Gossip Game’s Ms. Drama, Inside Edition’s Lena Cohen, Industry Photographer Ronnie Wright, Atlantic Records Legal Executive Suzen Baraka and many more.  Hosted by RJ Harper and Music by DJ Queen of Spades.

Preserve Our Legacy, Inc.

In 2007, after the devastating loss of a friends’ 3-year son, Jaden Hilton, Brett and Shana Melius co-founded Preserve Our Legacy, Inc.  Preserve Our Legacy, Inc. is a 501(c)(3) not-for-profit, whose mission is to educate individuals, especially those from various ethnic groups, about the benefits of stem cells through treatment options provided via peripheral blood stem cells (PBSC), bone marrow and umbilical cord blood donations.  We will provide educational resources needed to focus on early detection, whichcan lead to prompt treatment, which can improve the chances of a productive life and beneficial, healthy outcome.  In2010, Preserve Our Legacy launched the first educational program of its kind, P.O.L. Umbilical Cord Blood Program at Harlem Hospital.  The Melius’ co-wrote New Jersey legislation - Jaden’s Law, to increase awareness about PBSC and bone marrow donation within various ethnic communities, signed by New Jersey Governor Chris Christie on August 25, 2010, thus set into law.  In 2011, New York Assemblyman Keith L.T. Wright established May 3 as “Bone Marrow & Cord Blood Awareness Day”, for New York State.  The organization’s goal is to get their legislation A06582/S2115 – Jaden’s Law passed in New York State, various other states and federally throughout the United States.

The Need and Availability for Marrow and Cord Blood

The Need for Marrow and Cord Blood Transplantation 

by Maya Bryant

• More than 12,000 patients in the US are in need of marrow or umbilical cord blood transplant due to life threatening diseases such as leukemia and lymphoma each year
• Over 2/3 of patients in need of a transplant do not have a matching donor in their family 

Who’s Donating? 
It is the goal of Preserve Our Legacy, inc. to increase the diversity of the registry so minority groups will have increased chances of receiving the life saving transplant they need. Currently the registry is not diverse enough.

What are the chances of finding a match?

• A patient’s likelihood of finding a match is estimated from 66% to 93% depending on race and ethnicity.  
• Some of the barriers to finding a match and receiving a transplant are lack of access to health care, no or limited insurance coverage, lack of timely referral for transplant, decline in health status, and inability to find a matched donor or cord blood unit.

What are the chances of donating?

• It is nearly impossible to determine an individual’s chance in actually carrying on the act of donating. Someone with a more common tissue type will have a higher chance of donating than someone with a rare tissue type, but someone with a rare tissue type could be the only hope for a patient with the very same tissue type.  
• 1 of 40 potential donors on the Be the Match® registry will be called for additional testing to see if they are the best match for a patient
• 1 in 300 will be selected as the best possible donor
• 1 in 540 members will actually donate bone marrow or peripheral blood stem cells to a patient
• Some may not carry on with the donation because they are not the best match for the patient; they are hindered from donating because of health issues, a change of health plans, or decide not to donate for personal reasons.

SOURCE: National Marrow Donor Program® and Be The Match® Key Messages, Facts & Figures

Omega Psi Phi & P.O.L. Bone Marrow Drive, Yoga, and CPR at Columbia University

The MIGHTY Omicron Chapter of 

Omega Psi Phi Fraternity Inc. presents: 

Saturday October 19th, 2013 

10am-2pm 

Columbia University

Lerner Hall - east ramp lounge 

115th and Broadway

On going: P.O.L. Bone Marrow Registry Drive 

10am-11am 

Free Yoga class with Susan Higgins of Fashionista Yogi 

(www.fashionistayogi.com) 

11am-12pm 

Clinic services, STIs and HIV. A presentation by Family Planning 

Center/Young Men's Clinic of New York Presbyterian Hospital. 

12pm-2pm 

Free CPR class (non-certificate) 

Can We Talk Health? A FREE Informative Event

Get Informed! Affordable Care Act (Obamacare) Explained!

Get Informed!

Affordable Care Act

by Maya Bryant, edited by Akiim DeShay

You may be wondering what the new Affordable Care Act (aka Obamacare) is and how it affects you. This new act affects everyone in the United States: if you need coverage, you can use the marketplace to find some; if you have coverage, you gain new protections; if you refuse coverage you may have to pay a fee. The Health Insurance Marketplace will give you more choice and control over your health coverage regardless of your situation and operates in all states. 

What is it?

The Affordable Care Act was created to ensure all Americans have access to affordable health care by eliminating some of the past barriers such as pre-existing conditions as well as offering reasonable options to those who have historically been left out. It allows Americans to compare coverage options based on price, benefits, quality, and features much like other types of insurance (car, home, etc.). Those who like the insurance they have can keep their coverage and may still benefit from the additional protections such as a ban on lifetime limits and additional coverage for college aged children up to age 26.

Which Plan is Right for Me?

The ACA created a system of five plans bronze, silver, gold, platinum, and catastrophic coverage. These plans are based on the average amount of health expenses that will be paid for by each plan. 

http://www.healthpocket.com/affordable-care-act/metal-plans

These plans balance out the monthly premiums with out-of-pocket costs. For example, the Bronze option has the lowest monthly premium, but covers the least amount of expenses (60%) whereas the Platinum choice has the highest monthly premium and covers an estimated 90% of health care expenses. Some companies will offer a catastrophic plan which will cover 100% of the costs but at a much higher monthly premium. If you expect a lot of doctor visits or need regular prescriptions, the Gold or Platinum plan may be best for you. If not, you may be better off with the Bronze or Silver plans.  

If you aren't sure which plan is right for you, there will be plenty of help in your area to get personal assistance in finding a plan. Lines are open 24 hours a day, 7 days a week by phone at 1-800-318-2596. Navigators, application assisters, certified application counselors, and government agencies (State Medicaid and CHIP Offices), insurance agents, and brokers can be found to help at localhelp.healthcare.gov.  

How Much Will All of This Cost?

The health exchange marketplaces are different for each state. Each state has a certain number of insurance companies who offer some or all of the plans described above under the ACA. It is important to compare plans and companies because some companies will have different prices for the same plans in the same states. 

Depending on one’s income correlation with family size; one can get lower a cost on monthly premiums and lower out of pocket costs for private insurance.

Below is the range of incomes according to the size of one’s family that sets the price of their insurance with respect to income only in states where it is available.  The lower the income within the range, the more you save.  If your income is below the range that is matched up with your family size, you may be eligible for Medicaid. 

     Income range according to family size

 $11,490 to $45,960 for individuals

 $15,510 to $62,040 for a family of 2

 $19,530 to $78,120 for a family of 3

 $23,550 to $94,200 for a family of 4

 $27,570 to $110,280 for a family of 5

 $31,590 to $126,360 for a family of 6

 $35,610 to $142,440 for a family of 7

 $39,630 to $158,520 for a family of 8

It is also possible to see if free or low-cost coverage through Medicaid or the Children’s Health Insurance Program (CHIP) can be obtained.  Benefits of the Affordable Care Act include doctor visits, preventive care, hospitalization, and prescriptions.  Pre-existing conditions are covered. Plans can’t deny coverage or charge more due to earlier health conditions like pregnancy and disability.

Until you fill out a Marketplace application, you can use tools like the Kaiser Family Foundation calculator to get a rough estimate of how much health insurance may cost in 2014: 

https://www.healthcare.gov/how-can-i-get-an-estimate-of-costs-and-savings-on-marketplace-health-insurance/

What if I Don't Get Health Insurance?

In 2014, people who can afford health insurance will have to have health coverage or will have to pay a fee. They also will have to pay the entire cost of all their medical care and are not protected from very high medical bills that may lead to bankruptcy.  The fee would be 1% of their yearly income or $95, whichever is higher and it increases every year (in 2016 it will be 2.5% of income or $695). For uninsured children it is: $47.5 per child max $285.

How Can I Avoid Fees?

This fee can be avoided by having minimum essential coverage which includes: any marketplace plan (or individual insurance plan), an employer plan (including COBRA), Medicare, Medicaid, CHIP, TRICARE, Veterans health care programs, and Peace Corps Volunteer plans. Coverage only for vision or dental care, Workers’ compensation, Coverage only for a specific disease or condition, and plans that offer only discounts on medical services do NOT qualify as minimum essential coverage.  

This is an attempt to simplify the explanation of how the Affordable Health Care will affect people. This is not an endorsement of the act nor has this page been endorsed or paid for this content by anyone.  For further understanding of the Affordable Care Act and the health exchanges go to the government website: https://www.healthcare.gov/ 

GlobalGrind.com President Michael Skolnik joins Preserve Our Legacy advisory Board of Directors

GlobalGrind.com President Michael Skolnik joins Preserve Our Legacy advisory Board of Directors

For Immediate Release

October 6, 2013 

New York, NY – On May 1, 2013, Preserve Our Legacy, Inc. honored Michael Skolnik with the Community Award.  As an inspirational writer, Michael has made a difference in the world of social media by increasing awareness about education, poverty and violence for those that were once forgotten.  His efforts have brought light to issues such as Trayvon Martin and other minorities killed in violent acts throughout America.  In addition to,expanding support for other social issues within the country.  Therefore, Preserve Our Legacy is proud to announce Globalgrind.com President Michael Skolnik joins the Preserve Our Legacy Advisory Board of Director’s to assist with increasing awareness throughout a diverse generation about health and the Preserve Our Legacy’s mission.    

Michael Skolnik

Michael Skolnik is a 21st century civil rights leader.  As the Political Director to hip-hop pioneer Russell Simmons and President of GlobalGrind.com, an online destination founded by Simmons with over 4.5 million viewers per month, Michael is a leading voice for young America.  A trailblazer of social media with 120,000 followers on twitter, Michael has led national conversations about the death of Trayvon Martin and the subsequent trial of George Zimmerman, the Boston Marathon bombings, the rise of violence in Chicago, America’s relationship with race and the Obama presidency, amongst many other topics.  His 2012 essay titled, “White People, You Will Never Look Suspicious Like Trayvon Martin” was shared over 190,000 times on Facebook and was credited as one of the catalysts of bringing that story to national attention.  Michael regularly discusses the aforementioned topics, current events, and how they affect his generation on CNN, MSNBC, Fox News, NPR and HLN, to name a few media outlets. In his role as Political Director, Michael and Russell focus their workaround three core themes: violence, poverty and ignorance.  As President of GlobalGrind.com, Michael leads a website that serves a multi-racial segment of the 18-34 population, covering entertainment, lifestyle, fashion, style, music and politics. "I am proud to join the advisory board of Preserve Our Legacy.  There are few problems in this world that we know can be solved in our lifetimes.  It is powerful to be part of an organization whose main program is only asking for five minutes of your time.  Those five minutes could potentially save a life", says Michael Skolnik, President of GlobalGrind.com.

PreserveOur Legacy, Inc.

In 2007, after the devastating loss of a friends’ 3-year son, Jaden Hilton, Brett and Shana Melius co-founded Preserve Our Legacy, Inc.  Preserve Our Legacy, Inc. is a501(c)(3) not-for-profit, whose mission is to educate individuals, especially those from various ethnic groups, about the benefits of stem cells through treatment options provided via peripheral blood stem cells (PBSC), bone marrow and umbilical cord blood donations.  We will provide educational resources needed to focus on early detection, which can lead to prompt treatment, which can improve the chances of a productive life and beneficial, healthy outcome.  In2010, Preserve Our Legacy launched the first educational program of its kind, P.O.L. Umbilical Cord Blood Program at Harlem Hospital.  The organization also helped create New Jersey legislation - Jaden’s Law to increase awareness about PBSC and bone marrow donation within various ethnic communities, signed by New Jersey Governor Chris Christie on August 25, 2010,thus set into law.  In 2011, New York Assemblyman Keith L.T. Wright established May 3 as “Bone Marrow & Cord Blood Awareness Day”, for New York State.  The organization’s goal is to get their legislation A06582/S2115 – Jaden’s Law passed in New York State and various other states throughout the United States.

For Media or more information please contact Preserve Our Legacy at 877.778.3623ext. 702, Shana Melius, Co-Founder or Erica Lee-Benedetto, ext. 716 or Dexter Ottley, ext. 712.    

POL Board Member to Run New York Marathon to Raise Funds for POL Cord Blood Program

PRESERVE OUR LEGACY ADVISORY BOARD MEMBER DOMINICK BOYCE RUNS THE NEW YORK MARATHON TO RAISE FUNDS FOR CORD BLOOD PROGRAM 11/3

Dominick Boyce is a native New Yorker and health care advocate who cares about family, youth and community. He is married and a father of two children. Dominick is a Christian man and knowledgeable father who is also willing to lend a hand. He is very active in the lives of his two sons who reside with him and his wife in Harlem. Since 2011, Dominick has served as a volunteer manager and coach for baseball teams in the Harlem Little League. Also, he volunteers time supporting youth programs at the Double Discovery Center at Columbia University and at the Impact Repertory Theatre of Harlem.  

Professionally, Dominick Boyce works as a Faculty Practice Administrator at Harlem Hospital.  Also, he is an Adjunct Professor of Public Affairs and Administration at the Graduate School of Management at the Metropolitan College of New York.  Dominick is an avid runner that promotes awareness of health causes that disproportionately affect minorities and women.  He has run over 6 marathons and 25 half-marathons across the country. His persona motto is Luke 12:48 : “ For  whom much is given, much is required.”

For Media or more information please contact Preserve Our Legacy at 877.778.3623 ext. 702, Shana Melius, Co-Founder or Erica Lee-Benedetto, ext. 716 or Dexter Ottley, ext. 712.  

POL Annual Bone Marrow & Umbilical Cord Blood Awareness Week 2013

ASSEMBLYMAN KEITH L.T. WRIGHT, RIVERBANK STATE PARK & PRESERVE OUR LEGACY TO PARTNER FOR ANNUAL AWARENESS WEEK OCTOBER 22, 2013

Date: October 22, 2013

Location: Riverbank State Park Cultural Theater
679 Riverside Dr. New York, NY 10031

Time: 6:00 PM – 9:00 PM

Each year Assemblyman Keith L.T. Wright and Preserve Our Legacy, Inc. partner to increase awareness within various New York communities by hosting their annual bone marrow and cord blood awareness week. This year is the fourth annual awareness week with a new partner of Riverbank State Park. Details of events to be posted soon.

Assemblyman Keith L.T. Wright

A lifelong resident of Harlem, Assemblyman Keith L.T. Wright has earned a reputation as a dedicated and thoughtful public servant who gets results for his constituents. Active in his Harlem community, Wright has helped grow small businesses, create affordable housing, and increase economic opportunities for all New Yorkers.  Since 2008, Assemblyman Keith L.T. Wright has supported Preserve Our Legacy and introduced Jaden’s Law in the New York State Assembly.  “Our communities continue to be ravaged by silent killers like heart disease, kidney disease and other deadly illnesses, yet minorities still represent the lowest number of registered donors.  Since we represent almost half of those who need transplants, it is critical that we do all we can to increase awareness of these risks.  My bill, A.6582 would take the first steps to educating the broader public about the importance of bone marrow and cord blood donation”, Assemblyman Keith L.T. Wright, 70th AD.

Riverbank State Park

Celebrating their 20th anniversary this year, Riverbank is the only park of its kind in the Western Hemisphere. Inspired by urban rooftop designs in Japan, this 28-acre multi-level landscaped recreational facility is a state-of-the-art park facility. Rising 69 feet above the Hudson River, Riverbank offers a wide variety of recreational, athletic and arts experiences for all ages, interests and abilities.  “The New York State Office of Parks, Recreation and Historic Preservation is pleased to host this important event!  The awareness of the health benefits that Preserve Our Legacy, Inc. promotes is as significant to the future of the communities we serve as the physical activity promoted by the programs offered and the facilities available at Riverbank State Park” said Karen Phillips, Director of the New York City Region of New York State Parks.

For Media or more information please contact Preserve Our Legacy at 877.778.3623 ext. 702, Shana Melius, Co-Founder or Erica Lee-Benedetto, ext. 716 or Dexter Ottley, ext. 712.   For more information about Assemblyman Keith L.T. Wright contact 212.866.5809 or Riverbank State Park log on to: http://nysparks.com/parks/93.

September: Child Obesity Awareness Month

Let’s Talk About… 

September: Child Obesity Awareness Month

by Maya Bryant

What is Obesity? 

According to the Centers for Disease Control and Prevention Overweight and Obesity are both terms used to describe body weight considered to be unhealthy for a certain height. This is measured by calculating BMI (Body Mass Index) to determine the amount of fat a person has. For children, BMI is categorized by height, weight, age, and gender.  Children with a BMI between the 85th and 94th percentiles are considered overweight; children with a BMI at or over the 95th percentile of the population are considered obese.  Overweight and obesity are the result of “caloric imbalance”—too few calories expended for the amount of calories consumed—and are affected by various genetic, behavioral, and environmental factors

A few statistics:

• Childhood obesity has more than doubled in children and tripled in adolescents in the past 30 years.
• The percentage of children aged 6–11 years in the United States who were obese increased from 7% in 1980 to nearly 18% in 2010. Similarly, the percentage of adolescents aged 12–19 years who were obese increased from 5% to 18% over the same period.
• In 2010, more than one third of children and adolescents were overweight or obese.

The Problem with Child Obesity 

Obesity, unfortunately, has many negative effects on health. Obese youth are more likely to have risk factors for cardiovascular disease, such as high cholesterol or high blood pressure. Obese adolescents are more likely to have pre-diabetes, a condition in which blood glucose levels indicate a high risk for development of diabetes. Children and adolescents who are obese are at greater risk for bone and joint problems, sleep apnea, and social and psychological problems such as stigmatization and poor self-esteem. Children and adolescents who are obese are likely to be obese as adults and are therefore more at risk for adult health problems such as heart disease, type 2 diabetes, stroke, several types of cancer, and osteoarthritis.  Overweight and obesity are associated with increased risk for many types of cancer, including cancer of the breast, colon, esophagus, kidney, pancreas, gall bladder, thyroid, ovary, cervix, and prostate.

How we can prevent this!

Fortunately, obesity is a disease that can be avoided if preventative measures are taken place. Healthy lifestyle habits, including healthy eating and physical activity, can lower the risk of becoming obese and developing related diseases.  The dietary and physical activity behaviors of children and adolescents are influenced by many sectors of society, including families, communities, schools, child care settings, medical care providers, faith-based institutions, government agencies, the media, and the food and beverage industries and entertainment industries. Schools play a particularly critical role by establishing a safe and supportive environment with policies and practices that support healthy behaviors. Schools also provide opportunities for students to learn about and practice healthy eating and physical activity behaviors.

Let’s Move!

First Lady Michelle Obama launched an initiative entitled Let’s Move in early 2010 to fight childhood obesity in the United States of America.  This movement tackles obesity by providing healthier foods in our schools, giving every family the accessibility to healthy, affordable food, and helping children become more physically active. 

The five pillars of the Let’s Move! Initiative: 

1. Creating a healthy start for children
2. Empowering parents and caregivers 
3. Providing healthy food in school
4. Improving access to healthy, affordable foods
5. Increasing physical activity 

Everyone, from teachers to parents, celebrities to the government needs to work together to better the future in OUR children’s health.

http://www.youtube.com/watch?v=mYP4MgxDV2U <Beyoncé promotes Let’s Move! campaign with new music video

Childhood Cancer Awareness Month

Preserve Our Legacy, Inc joins families, caregivers, charities and research groups across the United States to observe September as Childhood Cancer Awareness Month. In the U.S., almost 13,000 children under the age of 21 are diagnosed with cancer every year; approximately 1/4 of them will not survive the disease. A diagnosis turns the lives of the entire family upside down. The objective of Childhood Cancer Awareness Month is to put a spotlight on the types of cancer that largely affect children, survivorship issues, and to help raise funds for research and family support. 

Preserve Our Legacy, Inc was created because of childhood cancer In 2006, its founders, Brett and Shana Melius met a 3-year old African-American boy named Jaden Hilton. This new acquaintance would not only touch their lives, but would eventually have a significant impact on the lives of many others. At the time, Jaden was battling Leukemia which inspired them to build awareness about stem cell treatments and to find a donor for Jaden. Despite their efforts, Jaden lost his battle with Leukemia on January 29, 2007. After this devastating loss, they heightened their efforts to build awareness especially amongst communities that are just not educated, about the need for donors, for those who are affected by leukemia, sickle cell anemia, heart disease, diabetes and other diseases at higher rates throughout the US. In an effort to fulfill the mission of educating these under represented communities, Preserve Our Legacy was formed.

Preserve Our Legacy: Spare Cells, Saves Lives Health Panel Discussion

GET INFORMED! Sickle Cell Disease: Symptoms and Complications

GET INFORMED!

Sickle Cell Disease: Symptoms and Complications

 by Maya Bryant

Sickle Cell Disease is a serious disease that has very serious symptoms.  Symptoms of the disease start at the early age of 4 months, and can occur entirely throughout one’s lifespan.  This segment is to inform about the various symptoms of Sickle Cell Disease. In the next segment, we will then discuss the treatments for these symptoms.  

Early Symptoms 

The earliest symptom for a patient with sickle cell can be found within the first 4 months of life.  This symptom is known as hand-foot syndrome.  Because babies have very small hands and feet, sickle cells can easily get clogged in the tiny blood vessels of these areas and cause the hands and feet to swell.  

http://adkteamtalk.files.wordpress.com/2012/07/hand.png

Other Complications
The majority of problems that come with sickle cell come from block blood vessel due to the clogging of sickle cells.  Patients with sickle cells often get organ damage, especially in the spleen.  Since the spleen is a prominent part of the immune system, patients with sickle cell disease have a high risk of infections. 

Other symptoms include 

• delayed growth
• jaundice
• vision problems
• coldness in the hands and feet
• fatigue
• dizziness
• shortness of breath

It is important for patients with sickle cell to adopt and maintain a healthy diet that that is low in salt, added sugars, and solid fats to prevent symptoms as much as possible.  The patient should also drink plenty of water to prevent dehydration.  Most doctors recommend for patients to take folic acid to help the body make more red blood cells.  

Sickle Cell Crisis 

The main complication that comes with sickle cells disease is sickle cell crisis.  This can be found anywhere in the body where blood flows, but mainly occurs in the joints.  People with this disease describe the feeling of the crisis as repeatedly being stabbed with a butcher knife in the same spot.  All patients with sickle cell have crises, but some have them more often than others.  If the pain is unbearable, the patient needs to go to the hospital as soon as possible.  Some crises last for a couple hours, while others can occur for weeks at a time.

GET INFORMED! Sickle Cell Disease: Where do you get it from?

GET INFORMED! 

Sickle Cell Disease: Where do you get it from?

by Maya Bryant

For “Part Two” of the Sickle Cell Disease series, we will discuss how genetics play a part.  Earlier, we learned how blood cells work, the definition of sickle cell disease, and a few statistics on the disease.  If you haven’t had a chance to look at Part 1, take a second to scroll down and read it right now!  This would help you understand this new section much better.  Now, we are going to discuss DNA and how Sickle Cell Disease is acquired through genetics.

DNA

DNA stands for deoxyribonucleic acid.  It is a molecule that makes up the genetic material of all living things that is found in each and every cell.  DNA is a like a cell’s blueprint: it contains instructions for a cell’s structure and function.  Each person’s DNA contains alleles from each parent. Half of each parent’s alleles are randomly selected to be passed on to the child. (½ alleles from father + ½ alleles from mother = child’s DNA makeup) 

Dominant vs. Recessive Traits 

Each allele has various forms.  This explains why everyone looks different. There is a large variety of each genetically express trait.  Some alleles are dominant and others are recessive. In order for the recessive trait to be expressed, two recessive alleles from each parent have to be passed down to the offspring. In other for a dominant trait to be expressed, the offspring could have both dominant alleles for the trait or a dominant allele and a recessive allele.  The dominant allele DOMINATES over the recessive allele.  For example, brown eyes are a dominant trait and blue eyes are recessive.  If a child was passed down a brown eye allele from their father and a blue eye allele from their mother, the child would have brown eyes, but will still be able to pass down either allele to its offspring.  Complicated right? 

Genetics and Sickle Cell Disease

Sickle Cell Disease is a recessive trait, which means both parents have to pass on a recessive allele for Hemoglobin S (as we discussed in the first segment) to the offspring.  If one dominant and one recessive allele are passed, the offspring has the trait for sickle cell.  This means that the child is able to produce normal red blood cells with Hemoglobin A.  They also may produce some sickle cells here and there, but not enough to harm any bodily functions.  Because the trait can still be passed along, two parents with the sickle cell trait have a 25% chance of having a child with the disease.  

The Advantages of Cord Blood Stem Cell Transplants

The first successful cord blood stem cell transplant was performed in Paris, France in 1988. Since then it has become commonplace in the world of stem cell transplants and has saved thousands of lives. As a matter of fact there are some possible advantages for some patients.

POSSIBLE ADVANTAGES

Availability

Cord blood is stored in a public cord blood bank. Prior to being frozen for storage it has already been screened and tested therefore making it immediately available for a patient in need. A marrow or peripheral donor must be located and tested for donor suitability which can take several months and even if proved suitable there always remains a chance the donor may back out.

Tissue Type Matching/ Human Leukocyte Antigen (HLA) Matching

HLA matching between donor and patient is usually critical for patient survival. A close match improves the possibility of engraftment as well as reduces the possibility of graft-vs-host disease (GVHD). Although a close HLA match between donor and patient is preferred the match does not have to be as close as it would for a marrow or Peripheral blood donor.

Graft-Versus-Host Disease (GVHD)

GVHD is a complication that can occur after transplantation where the donor’s immune cells (the graft) attack the patients healthy tissue/organs (the host) such as skin, lungs, eyes, kidneys, mouth, etc. This condition can be debilitating and often fatal. Studies show that Cord blood transplants result in fewer and less complicated cases of GVHD.

Diversity

Due to efforts to diversify the cord blood banks more minorities have had access to a transplant than they would if they had to rely solely on marrow and peripheral blood donors. For example in 2010 just over half of African American transplant recipients received a cord blood transplant as opposed to a marrow or peripheral blood transplant.

Infectious Disease Transmission

Cord blood stem cell transplants carry less risk of transmission of infectious diseases compared with stem cells from the peripheral blood or marrow of related or unrelated donors.

POSSIBLE DISADVANTAGES

Age of Clinical Data

Despite the success of cord blood transplants the procedure is still considered fairly new compared to marrow donors. This means that some long term results and possible long term issues have yet to be studied or observed.

Long Term Storage

It is not known how long cord blood can be frozen and stored before it loses its effectiveness. However cord blood units have been preserved for as long as 10 years and have still been successfully transplanted.

Unit Size

The number of cells required to successfully engraft in a host varies depending on the size and disease status of the patient. Cord blood unit size is usually limited since only a certain amount of cells can be extracted from an umbilical cord. Therefore it may take longer for the transplanted cells to engraft, meanwhile leaving the patient vulnerable to infections. In many cases two cord blood units have been used, however this requires the availability of two matching or semi-matching units.

MAY 3rd IS BONE MARROW AND UMBILICAL CORD BLOOD DONOR REGISTRATION DAY IN NEW YORK STATE

Two years ago on May 3rd Preserve Our Legacy, INC along with donors, patients, and supporters met in New York states capital Albany to raise awareness about the lack of sufficient bone marrow and umbilical cord blood donors within ethnic communities in New York State. 

They met with their local legislators in support of New York State bill now called A06582/S2215 also known as "Jaden's Law", which has the potential to add hundreds of thousands of donors to the registry without costing taxpayers money. One this day May 3rd was declared Bone Marrow and Umbilical Cord Blood Registration Day in New York State.

The Jaden’s Law bill has yet to be voted on but you can show your support today by signing the online petition HERE

Chrisette Michele hosts our Spare Cells Saves Lives event on May 1 @ The 4040 in New York

Spare Cells Saves Lives Networking Fundraiser

Preserve Our Legacy, Inc.

Wednesday, May 1, 2013 from 6:00 PM to 11:00 PM (EDT)

The 40/40 Club

6 W 25th St  New York, NY 10010

tickets here

Spend a wonderful evening with Grammy Award winning singer Chrisette Michele as she shares her thoughts and unique view of the world on various health disparities that affect our community. You won’t want to miss the opportunity to bid on hand-made jewelry, silent auction, a change to win a destination trip of your choice, as well as many other quality items the New York City community has to offer.

Honorees

Senator Kristen Gillibrand, Senator David Carlucci, City Councilman Andy King,  Michael Snolnik, Debra Pucci, MCNY and Sudler & Hennessey. 

While you are enjoying this wonderful evening, you are helping to build an exciting community agency.   Preserve Our Legacy has a vision. By addressing Bone Marrow & Umbilical Cord Blood Awareness issues that impact our community, all of our lives are improved.   Ignorance, lack of resources and disconnection with community are key factors in Bone Marrow & Umbilical Cord Blood Awareness. You can help build Preserve Our Legacy and improve the lives of so many community members and families.

Well over 200 guests invited to attend. Thousands more will see our announcements through social media and our program guides; many others will participate through our web site and via the mail.

Gets Tickets Here

Got Cord Blood? POLs Umbilical Cord Blood Program Gets Even Better

The POL Umbilical Cord Blood Program is a grass-roots partnership with Harlem Hospital, Lifebank USA, and Corcell that increases umbilical cord blood donations within various ethnic communities where the need is the greatest. Dr. Edgar O. Mandeville, Director of OB/GYN and Shana Melius, MBA (Co-Founder/Program Developer) lead the program. The program launched on December 21, 2010, where Dr. Edgar Mandeville collected the first historical cord blood unit.  This made the POL Umbilical Cord Blood Program the first of its kind in the nation. Our program has recently expanded and now offers public and private cord blood banking opportunities.

P.O.L Umbilical Cord Blood Program - Public

This program provides Preserve Our Legacy the opportunity to partner with various public cord blood banks to increase donation meet personally with pregnant mothers at hospitals.  We then explain Jaden’s story and the importance of donating the umbilical cord blood at no cost to the mother. These units would be discarded as medical waste, however they provide treatment options with adult stem cells provide for various health disparities.  

@gotcordblood

Expecting mothers who are scheduled to deliver at Harlem Hospital and who are interested can register on-site to donate their umbilical cord blood to a public bank which will be collected at that the hospital immediately after birth. Therefore, our program increases the available donated cord blood for public banks, especially, for the treatment of ethnic children and adults with diseases such as leukemia and sickle cell anemia.   

P.O.L. Umbilical Cord Blood Program – Private

This new program division provides Preserve Our Legacy the ability to partner with various banks and provide new mother’s the ability to store their baby’s cord blood for their own personal use at an affordable rate.  This personally stored unit provides families the ability to utilize their baby’s cord blood.  Treatment options are developing daily within the science world.  In the event a disease develops or a major trauma, this stored unit may be used years to come as a possible treatment option for someone in their immediate family. 

@gotcordblood

Calling ALL FELLOW NEW YORKERS! We need YOUR help getting New York S2215 Passed!

Please help us get Jaden’s Law passed in the New York!

Sign the Petition

Passage of this law will help educate and inform individuals of the steps necessary for saving a life through bone marrow or PBSC donation.

Jaden Hilton lost his life at only 3 years old because he did not have a bone marrow or stem cell donor for a lifesaving transplant. So many children and adults are unable to receive this life saving treatment that has existed for 30 years simply because there are still not enough available donors on the national registry. We can change that. We can tell Albany that it is time to pass Jaden’s Law. 

New York already encourages tissue and organ donation which saves lives every year but, that does not include the bone marrow/stem cell registry because just like blood, plasma, and sperm, it is a living donation. So many people are dying due to the lack of registered donors on the bone marrow national registry.

Jaden’s Law New York has 3 goals:

• Establish an online brochure about bone marrow donation that is located on the Commission of Health and DMV website.

• Establish a bone marrow registration option listed on the Department of Motor Vehicle that will inform New Yorkers as to how to donate stem cells/bone marrow for research.

• Establish a voter registration process option. It will provide information about the bone marrow/stem cell registry and provide future literature, where applicable. It will also allow ability for voluntary anatomical donation of bone marrow for research.

 Sign the Petition

This has the potential to add hundreds of thousands of donors to the registry without costing taxpayers money. It only makes use of things already in place and will save lives. Isn’t that great? So let’s call our state representative and the governor because there are people in the hospital now who are waiting!

Contact Gov. Andrew Cuomo: 
http://www.governor.ny.gov/contact/GovernorContactForm.php

Who is my NY State Assembly Representative: 
http://assembly.state.ny.us/mem/?sh=search

Who is my NY State Senator: 
http://www.nysenate.gov/contact_form


Link for NY S2215- JADEN'S LAW petition: https://www.change.org/petitions/calling-all-fellow-new-yorkers-we-need-your-help-getting-new-york-s2215-passed

We're Moving Fast... So Here's How to Keep up with Preserve Our Legacy

There are some exciting things happening with Preserve Our Legacy, INC. If you are interested in finding out what they are, just check out our social channels:

• POL YouTube channel: watch videos of past POL events and celebrity Public Service Announcements.
• On Twitter you can follow us @Preserveourlgcy
• And of course you can 'like us' on Facebook
• And be sure to check out our website: PreserveOurLegacy.org

And we take it you already found our blog, because if you hadn't you wouldn't be reading this.  So be sure to stay tuned because we have some very exciting things happening this year. We can hardly wait.