Why We Need Jaden’s Law (A4171/S5917)

This is Mary Olivia a foster child who has more resilience and strength than other kids her age. Mary was diagnosed with Acute Myeloid Leukemia (AML). She was hospitalized for five months for intense chemotherapy treatment. The chemotherapy caused Mary to have heart failure. After battling heart seizures she received a heart transplant. A year later, she was diagnosed with Chronic Myelogenous Leukemia (CML). Mary's life can be saved if she is treated with a bone marrow transplant. Unfortunately, African Americans are underrepresented in the national registry for Bone Marrow. This is a common problem that many families face, especially those from certain ethnic groups such as African Americans, Hispanics, Asian Americans, and many more. That’s why Jaden’s Law (A4171/S5917) was proposed: to increase awareness about the benefits of bone marrow, peripheral blood stem cells (PBSCs), and cord blood stem cells.

Every day, people in the U.S. die from diseases that can be treated if they receive bone marrow or cord blood transplant.  Jaden's Law was passed in New Jersey providing all residents to receive information about bone marrow and/or PBSCs, the National Bone Marrow Donor Program, the benefits of donating and how to register. But now we want the law to pass in New York and we are reaching out for help. We need any kind of support to provide and raise awareness about this necessity.

Did You Know?

• Out of 193,000 registered cord blood donors, only 8% are African-American. Out of 11 million registered bone marrow donors 6% are African American.
• According to New York State Department of Health (2015), there are 19,570,261 people in New York State, out of which, 15% are African-American or Black
• Sickle Cell Anemia, Leukemia (Cancer), Breast Cancer, Diabetes, and Heart Disease are diseases that can be treated with stem cells via bone marrow, PBSC and cord blood donations.

Facts About Jaden’s Law (A4171)

• Provides Information and spreads awareness about bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells on the NYS Department of Motor Vehicles with an online brochure.
• Adds information about the need of donors with voter registration card.
• Online brochure about the need of bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells and defines details about treatment options, provided along with the need of ethnic donors on NYS Department of Health website.
• Provides locations where individuals can register to donate bone marrow, peripheral blood stem cell (PBSC) and cord blood within New York State and NYC

Please Contact the following legislators to help us get Jaden’s Law (A4171) passed in New York State

• Senate Health Chair: Senator Kemp Hannon, District Office: 516-739-1700 and Albany Office: 518-455-2200
• Assembly Health Chair: Assemblyman Richard N. Gottfried, District Office: 212-807-7900 and Albany Office: 518-455-4941
• Speaker of the Assembly: Assemblyman Corl E. Heastie: District Office: 718-654-6539 and Albany Office: 518-455-4812
• Speaker of the Senate: Senator John J. Flanagan: District Office: 631-361-2154 and Albany Office: 518-455-2071
• Assemblyman Keith L.T. Wright: District Office: 212-866-5809 and Albany Office: 518-455-4941
• Senator Diane Savino : District Office: 718-727-9406 718-333-0311 and Albany Office: 518-455-2437

Please follow us on Facebook: Preserve Our Legacy, on Instagram: @preserveourlegacy, and on Twitter: @Preserveourlgcy

Why We Need Jaden’s Law (A4171/S5917)

This is Asaya Bullock: a 3 year old little boy who enjoys singing and playing games, but lives his life differently than the average toddler. Asaya has a rare autoimmune disease called immunodysregulation polyendocrinopathy enteropathy X-linked syndrome (IPEX). Having IPEX makes Asaya prone to more infections and food allergies. Unlike other kids, Asaya has more doctors appointments than playground visits. Asaya can be cured with a bone marrow match but unfortunately, African Americans are under represented in the national registry for Bone Marrow. Everyday Asaya is fighting to survive. This is a common problem that many families face, especially those from certain ethnic groups such as African Americans, Hispanics, Asian Americans, and many more. That’s why Jaden’s Law (A4171/S5917) was proposed: to increase awareness about the benefits of bone marrow, peripheral blood stem cells (PBSCs), and cord blood stem cells.

Every day, people in the U.S. die from diseases that can be treated if they receive bone marrow or cord blood transplant.  Jaden's Law was passed in New Jersey providing all residents to receive information about bone marrow and/or PBSCs, the National Bone Marrow Donor Program, the benefits of donating and how to register. But now we want the law to pass in New York and we are reaching out for help. We need any kind of support to provide and raise awareness about this necessity.

Did You Know?

• Out of 193,000 registered cord blood donors, only 8% are African-American. Out of 11 million registered bone marrow donors 6% are African American.
• According to New York State Department of Health (2015), there are 19,570,261 people in New York State, out of which, 15% are African-American or Black
• Sickle Cell Anemia, Leukemia (Cancer), Breast Cancer, Diabetes, and Heart Disease are diseases that can be treated with stem cells via bone marrow, PBSC and cord blood donations.

Facts About Jaden’s Law (A4171)

• Provides Information and spreads awareness about bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells on the NYS Department of Motor Vehicles with an online brochure.
• Adds information about the need of donors with voter registration card.
• Online brochure about the need of bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells and defines details about treatment options, provided along with the need of ethnic donors on NYS Department of Health website.
• Provides locations where individuals can register to donate bone marrow, peripheral blood stem cell (PBSC) and cord blood within New York State and NYC

Please Contact the following legislators to help us get Jaden’s Law (A4171) passed in New York State

• Senate Health Chair: Senator Kemp Hannon, District Office: 516-739-1700 and Albany Office: 518-455-2200
• Assembly Health Chair: Assemblyman Richard N. Gottfried, District Office: 212-807-7900 and Albany Office: 518-455-4941
• Speaker of the Assembly: Assemblyman Corl E. Heastie: District Office: 718-654-6539 and Albany Office: 518-455-4812
• Speaker of the Senate: Senator John J. Flanagan: District Office: 631-361-2154 and Albany Office: 518-455-2071
• Assemblyman Keith L.T. Wright: District Office: 212-866-5809 and Albany Office: 518-455-4941
• Senator Diane Savino: District Office: 718-727-9406 718-333-0311 and Albany Office: 518-455-2437

Please follow us on Facebook: Preserve Our Legacy, on Instagram: @preserveourlegacy, and on Twitter: @Preserveourlgcy

গুরদিপের কাহিনি

কেন আমরা যেইদেনের এর আইন প্রয়োজন (A4171/S5917)

গুরদিপ বেদি  লিম্ফ নোড রুগে আক্রান্ত হওয়ার পূর্ব পর্যন্ত একটি সুস্থ ছেলে ছিল। যদিও চিকিৎসার মাধ্যমে আরোগ্য লাভ করে ছিল, তথাপি শীঘ্রই আরো কঠিন রুগের খবর পেয়েছিল: গুরদিপ বেদি  লিউকেমিয়া রুগে আক্রান্ত হয়ে ছিল। এক বছর পনের  দিন পরে ২০০৫ সনের ১৫ জানুয়ারী সে মৃতু্য বরন করলো।  

গুরদিপের অসংখ্য সম্ভাব্য চিকিৎসার সুযোগ ছিল; উদাহরণ স্বরূপ  একটি অস্থি মজ্জা বা নাভিরজ্জুর স্টেম কোষ স্থানান্তরিত  করা যেত কিন্তু  দুর্ভাগ্যবশত, জাতীয় তালিকাভুক্ত কোন লোকের সাথে মিলে নাই।  ইহা একটি জাতিগত স্বাভাবিক সমস্যা। কিন্তু মানুষকে সচেতন করে এই সমস্যার সমাধান করা যেতে পারে।  সুতরাং, যেইদেনের আইন (A4171A)  সক্রিয় করার  জন্য প্রস্তাব করা হয়েছে। এই আইনের ফলে মানুষের সচেতনতা বৃদ্ধি পাবে।

  যদি অস্থি মজ্জা বা নাভিরজ্জুর স্টেম কোষ স্থানান্তরিত করার প্রতিবন্ধকতা না থাকে, তবে যুক্তরাষ্টে  প্রতিদিন যত লোক মারা যায়, তাদের  চিকিৎসা করা যেতে পারে। যেইদেনের আইন নিউ জারসীতে সক্রিয় করা হয়েছে এবং সকল অধিবাসীকে অস্থি মজ্জা ও নাভিরজ্জুর স্টেম কোষ  স্থানান্তর করার সুবিধা, অপরিহার্যতা, ইত্যাদি বিষয়ে অবগত করানো হয়েছে। কিন্তু এখন আমরা এই আইন নিউ ইয়র্কে সক্রিয়  করতে ইচ্ছুক। আমরা সকলের সাহায্য ও সহযোগিতার জন্য বিনীতভাবে আবেদন করছি।

আপনি কি জানেন?

• 193.000 নিবন্ধিত নাভিরজ্জুর রক্ত দাতাদের থেকে, শুধুমাত্র 10% এশিয়ান।
• 11 মিলিয়ন নিবন্ধিত অস্থি মজ্জা দাতাদের থেকে, শুধুমাত্র 7% এশিয়ান।
• নিউ ইয়র্ক স্টেট ডিপার্টমেন্ট ওব হেল্থ মতে (2015), 19.570.261 মানুষ নিউ ইয়র্ক স্টেট মধ্যে আছে, এবং এই সংখ্যাতে, 8.1% হয়েছে এশিয়ান।
• কাস্তে কোষ ব্যাধির, শ্বেতকণিকাধিক্যঘটিত রক্তাল্পতা (ক্যান্সার), স্তন ক্যান্সার, ডায়াবেটিস, এবং হৃদরোগ সব স্টেম সেল দিয়ে চিকিত্সা করা যেতে পারে যদি যথেষ্ট  অস্থি মজ্জা, প্রান্তস্থ রক্তের স্টেম কোষ এবং নাভিরজ্জু অনুদান থাকে।

যেইদেনের এর আইন সম্পর্কে তথ্য (A4171)

• নিউ ইয়র্ক স্টেট ডিপার্টমেন্ট ওব মোটর বেহিকলের  মধ্যে তথ্য প্রদান করে এবং অস্থি মজ্জা, প্রান্তস্থ রক্তের স্টেম কোষ ত্ত নাভিরজ্জু বিষয়ে সচেতনতা উত্থাপন করে একটি অনলাইন প্রচারপত্র মাধ্যমে।
• ভোটার রেজিস্ট্রেশন কার্ড সঙ্গে দাতাদের প্রয়োজন সম্পর্কে তথ্য যোগ করে।
• অস্থি মজ্জা, পেরিফেরাল ব্লাড স্টেম সেল (PBSC) ও নাভিরজ্জু রক্তের স্টেম সেল এবং চিকিৎসা বিষয়ে বিবরণ দেয় একটি অনলাইন ইস্তাহার মধ্যে, এবং জাতিগত দাতাদের প্রয়োজন বরাবর প্রদান করে নিউ ইয়র্ক স্টেট ডিপার্টমেন্ট ওব হেল্থ এর ওয়েবসাইটে।
• অবস্থানগুলি উপলব্ধ যেখানে ব্যক্তিরা লিখিয়া রাখা করতে পারে অস্থি মজ্জা, প্রান্তস্থ রক্তের স্টেম কোষ ত্ত নাভিরজ্জুর রক্ত নিউ ইয়র্ক স্টেট ডিপার্টমেন্ট ওব হেল্থ মাধ্যমে দান করে।

Please Contact the following legislators to help us get Jaden’s Law (A4171) passed in New York State

• Senate Health Chair: Senator Kemp Hannon, District Office: 516-739-1700 and Albany Office: 518-455-2200
• Assembly Health Chair: Assemblyman Richard N. Gottfried, District Office: 212-807-7900 and Albany Office: 518-455-4941
• Speaker of the Assembly: Assemblyman Corl E. Heastie: District Office: 718-654-6539 and Albany Office: 518-455-4812
• Speaker of the Senate: Senator John J. Flanagan: District Office: 631-361-2154 and Albany Office: 518-455-2071
• Assemblyman Keith L.T. Wright: District Office: 212-866-5809 and Albany Office: 518-455-4941
• Senator Kenneth P. Lavalle: District Office: 631-473-1461 and Albany Office: 518-455-3121

Please follow us on Facebook: Preserve Our Legacy, on Instagram: @preserveourlegacy, and on Twitter: @Preserveourlgcy. For more information please email: info@preserveourlegacy.org or call 1-877-778-3623.

Gurdeep's Story

Why We Need Jaden’s Law (A4171/S5917)

Gurdeep Bedi had always been a healthy boy until one day he suffered from lymph node infection. Although cured of the infection, Gurdeep shortly received more devastating news: he had been diagnosed with Acute Myelogenous Leukemia.   After battling Leukemia for one year and 15 days, Gurdeep Bedi passed away on January 4, 2005. Gurdeep had several potential treatment options such as a bone marrow or cord blood stem cell transplant but unfortunately, no match was found in the national donor registry. This is a very common problem that many ethnic groups face but this can be changed with the more awareness we spread about the benefits of bone marrow, peripheral blood stem cells (PBSCs), and cord blood stem cells. That is why Jaden’s Law (A4171) was proposed, whose purpose is to increase awareness of these benefits.

Every day, people in the U.S. die from diseases that can be treated if they receive bone marrow or cord blood transplant.  Jaden's Law was passed in New Jersey providing all residents to receive information about bone marrow and/or PBSCs, the National Bone Marrow Donor Program, the benefits of donating and how to register. But now we want the law to pass in New York and we are reaching out for help. We need any kind of support to provide and raise awareness about this necessity.

Did You Know?

• Out of 193,000 registered cord blood donors, 10% are Asian.
• Out of 11 million registered bone marrow donors, 7% are Asian.
• According to New York State Department of Health (2015), there are 19,570,261 people in New York State, out of which, 8.1% are Asian.  
• Sickle Cell Anemia, Leukemia (Cancer), Breast Cancer, Diabetes, and Heart Disease are diseases that can be treated with stem cells via bone marrow, PBSC and cord blood donations.

Facts About Jaden’s Law (A4171)

• Provides Information and spreads awareness about bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells on the NYS Department of Motor Vehicles with an online brochure.
• Adds information about the need of donors with voter registration card.
• Online brochure about the need of bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells and defines details about treatment options, provided along with the need of ethnic donors on NYS Department of Health website.
• Provides locations where individuals can register to donate bone marrow, peripheral blood stem cell (PBSC) and cord blood within New York State and NYC

Please Contact the following legislators to help us get Jaden’s Law (A4171) passed in New York State

• Senate Health Chair: Senator Kemp Hannon, District Office: 516-739-1700 and Albany Office: 518-455-2200
• Assembly Health Chair: Assemblyman Richard N. Gottfried, District Office: 212-807-7900 and Albany Office: 518-455-4941
• Speaker of the Assembly: Assemblyman Corl E. Heastie: District Office: 718-654-6539 and Albany Office: 518-455-4812
• Speaker of the Senate: Senator John J. Flanagan: District Office: 631-361-2154 and Albany Office: 518-455-2071
• Assemblyman Keith L.T. Wright: District Office: 212-866-5809 and Albany Office: 518-455-4941
• Senator Kenneth P. Lavalle: District Office: 631-473-1461 and Albany Office: 518-455-3121

Please follow us on Facebook: Preserve Our Legacy, on Instagram: @preserveourlegacy, and on Twitter: @Preserveourlgcy. For more information please email: info@preserveourlegacy.org or call 1-877-778-3623.

Historia de Shannon

Por qué necesitamos la Ley Jaden (A4171A/S5917)

Esta es Shannon: a 10 años de edad, amable y amorosa que tenía un futuro brillante por delante de ella. Sus sueños se hicieron realidad como actriz infantil en el espectáculo famoso, "The Lion King", donde interpretó a Nala. Shannon era de Queens y descendiente de padre dominicano y madre afroamericana. Varios meses después de su debut en la serie, en septiembre de 2009, ella fue diagnosticada con leucemia mieloide aguda y necesitaba un trasplante de médula ósea, las células madre de sangre periférica o de células madre de la sangre del cordón umbilical. Viniendo de una procedencia étnica diversa, ella como muchos otros tuvo grandes dificultades para encontrar un donante, y desafortunadamente falleció un año después a la edad de 11. Habían varias opciones de tratamiento disponibles, como las células madre de médula ósea o sangre de cordón umbilical, pero un limitado número de donantes. Desafortunadamente, este es un problema común que enfrentan muchas familias, especialmente a los de ciertos grupos étnicos, como los afroamericanos, hispanos, asiático-americanos, y muchos más. Es por eso que se propuso la Ley Jaden (A4171A / S5917): para aumentar la conciencia sobre los beneficios de la médula ósea, las células madre de sangre periférica (PBSC), y las células madre del cordón umbilical.

Cada día, personas en los EE.UU. mueren a causa de enfermedades que se pueden tratar si reciben médula ósea o trasplante de sangre del cordón umbilical. La ley de Jaden fue aprobada en Nueva Jersey ofreciendo a todos los residentes información sobre la médula ósea y / o PBSC, el Programa Nacional de Donantes de Médula Ósea, los beneficios de la donación y cómo registrarse. Pero ahora queremos que la ley pase en Nueva York y estamos llegando en busca de ayuda. Necesitamos cualquier tipo de apoyo para proporcionar y crear conciencia sobre esta necesidad.

Sabías que?

• Fuera de 193,000 donantes de sangre de cordón registrados, el 19% son hispanos y el 60% son blancos o caucásicos.

• De los 11 millones de donantes de médula ósea registrados, el 10% son hispanos y el  65% son blancos o caucásicos.

• De acuerdo con el Departamento de Estado de Nueva York de la Salud (2015), hay 19,570,261 personas en el estado de Nueva York, de los cuales, 58% son blancos, mientras solo el 18.2% son hispanos.

• La anemia de células falciformes, la leucemia (cáncer), el cáncer de mama, la diabetes y las enfermedades del corazón son enfermedades que pueden ser tratadas con células madre a través de la médula ósea, PBSC y donaciones de la sangre del cordón umbilical.

Datos Sobre la Ley Jaden (A4171A/S5917)

• Proporciona información y extiende la concienciación sobre la médula ósea, las células madre de la sangre periférica (CMSP) y células madre del cordón umbilical en el Departamento de Vehículos Motorizados del Estado de NY con un folleto en línea.

• Añade información sobre la necesidad de donantes en la tarjeta de votantes.

• Folleto en línea acerca de la necesidad de la médula ósea, las células madre de la sangre periférica (CMSP) y células madre del cordón umbilical y define los detalles sobre las opciones de tratamiento, siempre junto con la necesidad de donantes étnicos en web del Departamento de Salud del Estado de NY.

• Proporciona lugares donde las personas pueden inscribirse para donar médula ósea, células madre de sangre periférica (CMSP) y sangre de cordón en el estado de Nueva York y la ciudad de Nueva York.

Por favor contactar los siguientes legisladores para ayudarnos a aprobar la ley Jaden (A4171A/S5917) en el Estado de Nueva York

• Silla de Salud del Senado: Senador Kemp Hannon, Oficina del Distrito: 516-739-1700, Oficina en Albany: 518-455-2200 o @kemphannon.
• Silla de Salud de la Asamblea: Asambleista Richard N. Gottfried, Oficina del Distrito: 212-807-7900, Oficina en Albany: 518-455-4941 o @DickGottfried
• Portavoz de la Asamblea: Asambleista Corl E. Heastie: Oficina del Distrito: 718-654-6539, Oficina en Albany: 518-455-4812 o @CarlHeastie.
• Portavoz del Senado: Senador John J. Flanagan: Oficina del Distrito: 631-361-2154, Oficina en Albany: 518-455-2071 o @LeaderFlanagan.
• Asambleista Keith L.T. Wright: Oficina del Distrito: 212-866-5809, Oficina en Albany: 518-455-4941 o @Wright4Harlem.
• Senator Diane J. Savino: District Office 1: (718) 727-9406, District Office 2: (718) 333-0311 and Albany Office: (518) 455-2437 o @dianesavino.

Por Favor siguenos en Facebook: Preserve Our Legacy, en Instagram: @preserveourlegacy, y en Twitter: @Preserveourlgcy.

Para mas informacion favor de mandar correo electronico a info@preserveourlegacy.org o llamar al 1-877-778-3623.

Shannon's Story

Why We Need Jaden’s Law (A4171A/S5917)

This is Shannon: a friendly and loving 10-year old girl who had a bright future ahead of her. Her dreams became a reality as a child actress in the famous show, “The Lion King” where she played Nala. Shannon was from Queens and came from a Dominican father and African American mother. Several months after her debut on the show, on September 2009, she was diagnosed with Acute Myeloid Leukemia and needed a bone marrow, peripheral blood stem cells or cord blood stem cells. Coming from a diverse ethnic background, she like many others had major difficulties finding a donor, and unfortunately passed away a year later at the age of 11. There were various treatment options available such as bone marrow or cord blood stem cells, but a limited number of donors. Unfortunately, this is a common problem that many families face, especially those from certain ethnic groups such as African Americans, Hispanics, Asian Americans, and many more. That’s why Jaden’s Law (A4171A/S5917) was proposed: to increase awareness about the benefits of bone marrow, peripheral blood stem cells (PBSCs), and cord blood stem cells.

Everyday, people in the U.S. die from diseases that can be treated if they receive a bone marrow or cord blood transplant.  Jaden's Law was passed in New Jersey providing all residents to receive information about bone marrow and/or PBSCs, the National Bone Marrow Donor Program, the benefits of donating and how to register. But now we want the law to pass in New York and we are reaching out for help. We need any kind of support to provide and raise awareness about this necessity.

Did You Know?

• Out of 193,000 registered cord blood donors, only 19% are Hispanic whereas 60% are White or Caucasian.
• Out of 11 million registered bone marrow donors, 65% are White or Caucasian but only 10% are Hispanic.
• According to New York State Department of Health (2015), there are 19,570,261 people in New York State, out of which 18.2% are Hispanic.
• Sickle Cell Anemia, Leukemia (Cancer), Breast Cancer, Diabetes, and Heart Disease are diseases that can be treated with stem cells via bone marrow, PBSC and cord blood donations.

Facts About Jaden’s Law (A4171A/S5917)

• Provides Information and spreads awareness about bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells on the NYS Department of Motor Vehicles with an online brochure.
• Adds information about the need of donors with voter registration card.
• Online brochure about the need of bone marrow, peripheral blood stem cells (PBSC) and cord blood stem cells and defines details about treatment options, provided along with the need of ethnic donors on NYS Department of Health website.
• Provides locations where individuals can register to donate bone marrow, peripheral blood stem cell (PBSC) and cord blood within New York State and NYC.

Please Contact the following legislators to help us get Jaden’s Law (A4171A/S5917) passed in New York State

• Senate Health Chair: Senator Kemp Hannon, District Office: 516-739-1700 and Albany Office: 518-455-2200
• Assembly Health Chair: Assemblyman Richard N. Gottfried, District Office: 212-807-7900 and Albany Office: 518-455-4941
• Speaker of the Assembly: Assemblyman Corl E. Heastie: District Office: 718-654-6539 and Albany Office: 518-455-4812
• Speaker of the Senate: Senator John J. Flanagan: District Office: 631-361-2154 and Albany Office: 518-455-2071
• Assemblyman Keith L.T. Wright: District Office: 212-866-5809 and Albany Office: 518-455-4941
• Senator Diane J. Savino: District Office 1: (718) 727-9406, District Office 2: (718) 333-0311 and Albany Office: (518) 455-2437 or @dianesavino.

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