World Sickle Cell Day

Awareness and action will change a curative into a cure!

World Sickle Cell Day 2009 ~ Global Activities

This was the first year for World Sickle Cell Day (WSCD).  We researched online and emailed out to everyone we could to see what they were planning for WSCD.  Listed below are the reported responces and activities healed globally.

Netherlands and Europe

Dear Nita,

Thank you for your email, in Europe we do not have a sickle cell day, maybe an idea to have one, however I would like to emphasize that in Europe we are not only talking about Blacks or Africans. We have 15 different countries involved, and I personally think that this is the reason that Sickle Cell has had its difficulties getting the recognition and resources, because the groups that started in the 70's have convinced themselves that it only affects Blacks and Africans.


On our last visit to the
UK, my group was made up of 10 different countries; in the UK most of the patients were Jamaican.
If we are to achieve more, then we must involve the world. I have patients from,
Afghanistan, Bulgaria, France, Germany, Turkey, and Morocco.


Our achievements with Bone Marrow transplants in the Netherlands haven’t been too good, we have one patient that has survived the others have either died, or have been left with more problems than they began with, so you can imagine we are very careful in our promotion of the  bone marrow transplant operations. 
We are not that far to achieve the umbilical blood donor, this due to legislation in the Netherlands, Belgium does allow it, the Netherlands will eventually follow however there will be a lot of experiments before they achieve it.
 
Our problems I think are different to the
USA, we have difficulty in getting the correct treatment, our patients are dying due to bad practice, however getting proof is more difficult, as we do not have the same insurance system as the states.
 
It would be good to get more involved with the states as your progress is further than ours; we have achieved a lot however we are certainly not finished.  Our biggest problem are the doctors, we try and work with them, however they still are not achieving what we would like, and that is a multidisciplinary approach.
 
Please keep in touch, could you do me a favor, you have a postage stamp developed and designed by a sickle cell patient, is it possible to have an original stamp, we would also like to develop one.

Dear Nita,

 

Thanks for the stamp, will tell you when I get it.


As I said to you before, we have asked our members to donate blood, however the first generation sickerlers received a lot of blood, the second generation a lot less. Do you have many patients on Hydrea? we have mixed results, by some the reduced sickle cell crisis is clear to see, others, after two years they start to sickle again, and the third group, it doesn’t help at all. Do your children get hydrea? they are now offering it here, however the parents are not very happy.


There is one family that are trying to have a child, to enable to give the umbilical blood to the newborn, hoping that the newborn doesn’t have the disease, this will be carried out in Belgium, as the Netherlands at the moment doesn't allow it to happen.
 
What happens with the hospital admissions, we are still dealing with, ( no multidisplinary approach) patients whom get the title of junkies enz.  Why is this not improving?  Personally I think the UN should make sure ALL nations get enough information about the disease, there is still a closed circuit when trying to inform the different countries, with everyone together, as patient groups, we have a say. My biggest irritation at the moment is that the sickle and thalassemics are represented by doctors, whom say they know what is best for the patient, they may well treat, however the needs of the patients are best told by the patients. I am busy trying to set up a patient forum, whereby the patients (international groups) are on the board, and all the doctors are advisory. We have found that many doctors have an agenda, eg, funds for own research, and the patients treatment is not getting any better.
 
A board of patient organizations, for patients, and active for patients, with doctors as advisory, what a dream.

Los Angeles

New York

WSCD New York

Good Afternoon,

 

Enclosed is a brief outline of the program I am working on for World Sickle Cell Day.

 

On December 22, 2008 the General Assembly of the United Nations adopted a resolution drafted by the Democratic Republic of Congo to recognize sickle cell anemia as a serious world health problem.  Three other resolutions were adopted in conjunction - 2 on reducing and eradicating Malaria.  Resolution attached.

 

I was able to find the UN department that will be responsible for framing activities around the resolution.  They recently receive the report and have not yet begun to meet or assign any actions to the resolution.

 

I was referred to the Dept. of Public Information to find out how I can arrange a program in the General Assembly on June 19.  SCTPN is proposing a 1 1/2 hour presentation involving the resolution sponsor - Congo, the co-sponsors Brazil, Cuba and Slovinia, also Nigeria, India, Greece and Cambodia or Laos.  A Keynote presentation will be made by Dr. Kwame Ohene Frempong, Chief, Peds Heme/Onc and director of the Comprehensive Sickle Treatment Program.  He is a father of an adult son with SCD and grandfather of a newly diagnosed grandson.  Dr. Frempong has built a sickle cell treatment program in his home country of Ghana.  He certainly has a personal and professional relationship with this hemoglobinopathy and can represent both the US and Ghana.

 

Each participating mission will be asked to present information on how sickle cell impacts their countries: Statistics on trait/disease, ability or inability to test, provide treatment, their public education initiative, what is needed and their time frame of implementing changes.

 

The presentation would be preceded by a press conference and proceeded by a reception.  The 4 areas of focus for the press conference and Gen. Assembly presentation are:

  1. Trait awareness
  2. Increasing funding to develop more adult comprehensive treatment programs
  3. Increasing awareness on blood, tissue and cord blood donations
  4. Raising needed funds to purchase medical equipment in developing countries (electrophoresis machines, supplies, beds, etc.)

In a separate effort, SCTPN is organizing a Sickle Cell World Day (WSCD) Festival at Dagg Hammarskjold Plaza, a public park across the street from the UN.

 

The festival will feature food/non-food vending, performances and presentations.  Novartis, the NY Blood Center, DOH and 5 hospitals will table.  Novartis is bringing in Ruben Studdard.  We will work to enlist the other NY-based entertainers and athletes to participate as well.

 

It is short notice, but I would like to see WSCD events hosted around the country.  Small presentations or press conferences promoting sickle cell trait awareness are manageable and can be coordinated rather quickly.

 

If you have any easy ideas that we can share with our community collaborators or if you have contact with foreign physicians, community organizations or diplomats, please contact me so we can discuss how to rally their support for WSCD.

Ohio

I had to respond to this post because, yes we received the information in December, and we have been working towards our event since that time.
 
The Dayton Sickle Cell Affected Families are always ready to support and promote any awareness for the cause of sickle cell disease and other blood disorders.  We remain true to the objectives of our organization.  When any call come out, be it, Advocacy Day on Capital Hill, World Sickle Cell Day,  Advocacy Day at the State House, which we will do on June the 3rd, while our legislators are in session.  We attempt to create awareness all year round through health fairs, public service announcements. 
 
We have sent out PAS to our local media,   I have also sent the World Sickle Cell Day Proclamation to our local government officials,a d have received a responses from both our local and State officials.  When I don't post it is because I work 24/7 for sickle.  I some times go for months without posting, I do however read them all, and pray for each and every one.
 
Velvet, we are also going to use your ideal regarding our deceased family members and friends with a balloon launch.  I hope you don't mind.

Hi Sickle Cell Family,

DSCAFA, Inc. could not pass up the opportunity to give Miss Shayla and Family a "shout out" for raising awareness about Sickle Cell Disease in the Dayton Children's Medical Center television commercial.  If you haven't seen it, tune in to the ABC network (Channel 22 or Cable Channel 11).  I have seen it air at various times throughout the day (but mostly in the evening).  THANKS AGAIN SHAYLA AND FAMILY FOR DOING YOUR PART TO INCREASE AWARENESS ABOUT SICKLE CELL IN DAYTON AND SURROUNDING AREAS. 

Oklahoma

Hi Nita

 

Supporters of Families with Sickle Cell Disease, Inc Tulsa, Oklahoma a family /community driven organizations that work with both Oklahoma and Tulsa.  For World Sickle Cell Day our group is coordinating a citywide blood drive, a commemorative balloon release program, and a gospel concert.  Our theme is World Sickle Cell Day: Awareness, Education & Hope.