Sickle Cell Disease Awareness

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Comments Made That We've Heard and One's Left from Visitors of this Website

HEARTFELT

In 2010 Professor Yutaka Niihara, MD, MPH at the Los Angeles Biomedical Research Institute at Harbor- UCLA Medical Center (LA BioMed) shared:  He has outlived all of the Sickle Cell Patients he had when he started his practice. 

That is why he is working so hard to developed and is in Phase 3 of a clinical trial on a promising new treatment for sickle cell disease.

"The patented drug treatment involves the oral administration of L-glutamine, which is the most common amino acid in the body. This is one of a very few experimental treatments for sickle cell disease to reach the Phase 3 clinical trial stage."   For more information please visit:  http://www.physorg.com/news199104496.html

Classic Ignorant Statements Made About SC

A Health Professional shared in a 2010 seminar the true story about what she overheard while walking down the hall of the hospital she worked in:

A (seasoned) Nurse was walking with and speaking to a new nurse about a picture on a hospital pamphlet about Sickle Cell.  “I don’t know why they have all of these children on the cover, because Sickle Cell is just a black disease!”

Until the mindset is changed about Sickle Cell, these children will not correctly be serviced by all . . . and certainly NOT serviced if they live to be adults.  We have got to do a better job at ADVOCATING AND CHANGING OPINIONS TO LEARNING THE FACTS!!!!

PLEASE ATTEND THE TRAINING UNDER ACTIVITIES PRESENT AND PAST

AND contact them, then arrange to

HOST IT IN YOUR TOWN/STATE/COUNTRY

 Sickle Cell Disease Workshop

Enhancing Skills, Assessment and Pain Management

We Advocated For You - Your Comments:

04-13-2011

Thanks for all your help today, you made every thing work out so fast, I had many phone calls with people willing to help out all because of your care and concern. Nita you are a life saver.-- KV

 

You were lead here - Your comments Left:

May 17, 2011

Dear Madam,/Sir,
My haematologist says:"you have a sickle cell trait and you have NOTHING. You don't need research or treatment." I don't believe this. I'm looking for sponsors to visit conferences. My goal is to provide information and start a pilot for young adults who play sport and a parent group. I hope you will and can help me. Thank you. A

Apr 6, 2011

Your current activities are awesome. At your earliest convenience, please email me a list of your past activities. Thanks  LC

Feb 26, 2011,

Hello: I just discovered your great website. Our daughter's name is listed in your memorial list, and I just wondered how you knew of her. We lost her four years ago. Her doctors up here were ignorant about sickle cell. All the experiences you listed, for example, hostile ER staff always suspecting her of drug seeking when she was seeking relief for her pain crises, happened to her. I'm very interested in developing a blood supply in Vermont of African-American blood for our brothers and sisters who may need it. Thanks, M P

Feb 19, 2011

I googled my sons name this morning and this site came up. I’m not sure how you guys have gotten his name on file. He died March 2006 from complications of sickle cell disease. Browsing through this website, I feel a great burden for those who are still alive and fighting with this disease. How can I help? I’m in Maryland (far from Southern California) but would like to contribute more than just monetarily. Is there a support drive out here I can maybe be a part of? K

Feb 4, 2011

My wife and I have 4 children, 3 of our kids have Sickle Cell Disease. The ages of those affected range from 32 to 12. We all live together and we have suffered like so many others from the lack of awareness not only in our communities but in society as a whole. I am happy to say things are better than they were thirty years ago but we have many challenges ahead. Awareness has to be the foundation for change. From Health Care to Education to Employment and layered in between all those issues is having the opportunity to live with dignity. We are trying to do as much as we can to give others a better start on this journey than we had. As a father my mission is to prevent another parent from feeling the way I do. We thank all of you for all of the hard work you put into this cause. We are humbled and blessed to be on this earth at this time with people like you.     LA

Jan 17, 2011

My Name is Michelle, I live in NY. My oldest Daughter was born in Ghana with Sickle Cell disease. Her biological parents both died from the disease. She is 14 years old and has been in our country for 12 years now.

She spends much time hospitalized for her disease. She has suffered many bouts of acute chest syndrome and has endured multiple transfusions and blood transfers.

Binghamton is a smaller community and she is one of a handful of children with sickle cell. There is no pediatric Hematologist in our area so children need to travel to Syracuse NY, Albany NY or Childrens Hospital in Philadelphia for treatment by a specialist. We have been fortunate to have a wonderful set od doctors and nurses locally that have been treating Kassandra her entire American life that have taken time to understand her and her disease so that we can manage it mostly here at home lessening our travels. This has helped keep our family together and made life less stressful during hospital stays.


She has touched many lives in her short time on this planet. Doctors, Nurses, Teachers, Peers, Etc. are all amazed by her strength and fortitude as well as her ever cheerful attitude even when in the worst of pain and suffering. She is an amazing Kid!

It is because of her inspiration that many in the community would like to have a reoccuring fundraiser for sickle cell research. I am not able to find a local organization for the funds to go to and I have looked at the websites of many organizations that help Sickle cell kids but truth is I know those wanting to participate would want money to help Kassandra and others in the area and not go to another state for the kids there...

What organizations are available to send money to that are soley used for cure research? If there are not any is there an Upstate NY foundation to help children and Families with the disease?

We have been blessed with insurance that has eased our financial burden. God has supplied our needs but I know there are other children in our area with single parents who may need help with child care while one is in the hospital or transportation to a sickle cell center when needed. We are just not certain where to turn with our idea and I wondered if you could help me.

A couple local Karaoke DJ's and many people have come up with K- Karaoke for a cure. An event where you gather pledges to be able to sing Karaoke songs. No matter if you are a good singer and love to get up in front and show your talent or you are terrible and never want to sing but see this as an opportunity to help a child. We picked this over walking or a race because the children themselves can be involved without fear of a pain episode. The true vision is to make it as big as St Baldricks head shaving event for childhood cancer. We are going to start small but if done right we are confident it will grow to be a yearly event. ---MJ

Jan 5, 2011

I want to write about my personal experience as a sickle cell patient and what I went through during child bearing. How can I get sponsorship for it.   DY

Dec 28, 2010

How do i go about being a represenatative to speak to schools,etc. about sickle cell ..my daughter..R R died from sickle cell. I want to be trained to tell others about sickle cell.  DR

Dec 21, 2010

Hello, I saw the name "Michael Lockett" listed with those who've passed on. I had an amazing science teacher in 1993 named Michael Lockett with sickle cell, and I'm wondering if this is him? He was pretty young -- he'd be about 60 today.             Thanks,  A.

Dec 18, 2010

I want to know if your organisation can support a TV series that is meant to create awareness on Sickle cell disease in Nigeria, West Africa.  I feel if people are sensitize towards simply knowing their genotype and not mismatching it will go a long way into reducing and bringing an end to the disease.  This will be done in a tv series for 13 weeks in different regions of the country and there is dire need for sponsorship.  

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