Sickle Cell Disease Awareness

A candle loses none of its light by lighting another candle!

Activities: Sharing the Information (this page is always being updated!)

 If you are having or know of an activity that our SCD community needs to know about please send an email (AA4SCDAwareness@aol.com) to let us know so we include it, as we become:  1VIP ~ One Voice Interested and Participating.

This page includes:

Overview of Present and Ongoing Activities.

*Please note:  We have put information received in PDF form and put on the PDF Page, so they can be copied and forworded.

                Present Activities

Urban Health Radio Program (UHRP) Topic Sickle Cell

http://www.hopkinsmedicine.org/diversity_cultural_competence/urban_health_radio_program/

Urban Health Radio Program (UHRP)

"Breaking It Down: Our Health Our Way"

WOLB 1010 AM
Thursdays from 11 a.m. - 12 p.m.

The Urban Health Radio Program provides a straightforward and culturally relevant educational program to address challenges and promote sustainable solutions to address health and health care disparities affecting residents of Baltimore in general and more specifically East Baltimore. Our initial program will be in English and emphasize an African American and Urban Health format. In addition, we are working with the Latino Faculty Group to develop a Spanish version of our Urban Health Radio Program curriculum to be aired on a Spanish radio station.

wolb

May 19, 2011
Dr. Martha Hill, Dean, Johns Hopkins School of Nursing
and  Wenda Royster, Radio Program Host

Program Topic: "Sickle Cell"

The views and opinions expressed on this radio program do not necessarily reflect the views of WOLB radio or the Johns Hopkins University School of Medicine or its affiliates.

Upcoming Programming Dates and Topics  

2012Topics

 

FebruaryTheme: Sickle Cell Disease

Feb. 2

Basic Education on Sickle Cell Disease

Experts:

Lenny Feldman, M.D. FACP, FAAP, SFHM
Med-Peds Urban Health Residency Program Director
Associate Program Director, Osler Medical Residency
Director, Comprehensive General Medicine Consult Service
Editor, SHM Consultative and Perioperative Medicine Essentials for Hospitalists

Carlton Haywood Jr., Ph.D., M.A.
Core Faculty, Berman Institute of Bioethics Associate
Faculty, Welch Center for Prevention, Epidemiology, and Clinical Research
Assistant Professor, Division of Hematology, The Johns Hopkins School of Medicine

Dr. Lenny Feldman

Dr. Carlton Haywood

Feb. 9

Advocacy

Expert:

Sophie Lanzkron M.D., MHS
Associate Professor of Medicine and Oncology
Director, Sickle Cell Center for Adults at Johns Hopkins

Dr. Sophie Lanzkron

Feb. 16

Community Based Organizations Dedicated to Addressing Sickle Cell Disease

Expert TBA

Feb. 23

Pediatric Sickle Cell Disease Issues

Expert TBA


Listen to Past Radio Programming and link to Hopkins Experts

Cord Blood Sumposium

 

 

Online Global Sickle Cell Marrow Drive

We are working on our newest flyer.

Our Online Marrow Drive Flyer are designed to educate.  Find the PDF on the PDF Page.

On Going Projects/Activities

Sickle Cell Community Quilt Project

(Started June 19, 2011) 

The purpose of the Sickle Cell Community Quilt is to bring hope, joy, laughter; motivation and messages to uplift persons diagnosed with Sickle Cell Disease, and other community members.

 REQUEST: Would like to receive block submissions from anyone anywhere in the world!

•        Submit a block {1/4 piece of a 8.5 X11) sheet of color paper. 

•       Put a message of hope, a prayer, uplifting words, in memory of, your personal relation to sickle cell, etc.  Get creative!  Draw pictures, do art work, use Foamies Letter and Shape Stickers, etc. Just make it from the heart and not computer generated.

•       The block is made from paper, cardboard, construction paper. We prefer color paper, because it is more fun.  Use crayons, markers, color pencils for your quilt artwork.

I have put examples of it on the PDF Page!

If you don't want to start and keep one yourself, please mail it to us!  Please don't fold it and mark do not bend on the envelope or if you want to keep them and start your own, please email a clear quality digital picture of it. 

Our goal is to post the quilt online for everyone to see. The messages are designed for Members of our Sickle Cell Community when in need of some support and understanding, motivation, etc. . . . when it seems that no one understands or when you need words of hope and encouragement!

               Just know that you are NOT alone and people do care about you!!!!!

 ****************************************************************

Sickle Cell Awareness Garage Sale(s) 

The original idea for the Sickle Cell Awareness Garage Sale(s) came from the need to support and fundraise for THE OLDEST SICKLE CELL ORGANIZATION IN THE NATION the Sickle Cell Disease Foundation of California.  After learning about the facts surrounding lack of financial support and knowing that many Sickle Cell Foundations have already closed their doors, we realized that we can’t allow that to happen in CALIFORNIA!!!  Therefore, we are suggesting that our entire California Sickle Cell Community set the example for others to follow to assist in their own community. 

Our suggestion is to coordinate our Sickle Cell community to hold on going "Sickle Cell Awareness Garage Sale(s)", on the same days to educate the public about the real facts on Sickle Cell and asking people to help us help ourselves by supporting our Sickle Cell Foundation!!!

There are some limitations, so check with your city or county to see how many you can have a year, if you need permits, etc.

Our first one was held to help with WSCD.  We made $48!

Overview of Suggested SC Activities and Projects

Open Forum SCD (101) - continued monthly focuses on dialogue and education about sickle cell disease; blood and marrow donations.

Karaoke Marathon

School Text Books in America Project 

Professional Referrals Guide

SCD Bill of Rights

World Sickle Cell Day Activities

Message to our CA Sickle Cell Community.

Collaboration and Networking Opportunities:

·       New California Collaborative for Children with Special Health Care Needs please join.    www.lpfch.org/specialneeds,

·       Family Voices of California www.familyvoicesofca.org/ - 2011-2012 Budget What’s in Store for Children and Youth with Special Health Care Needs.

www.familyvoicesofca.org/files/BudgetImpacts2011FINAL.pdf

Advocate Training Program:

·       Women (18-30) Learn to Advocate for Policy Change by joining the California Black Women's Health Project Advocate Training Program (ATP). The ATP is a 9 month program which includes a ten-week course that meets for approximately 3 hours per class session twice monthly. The 2011 ATP has a special cohort for young women ages 18-30. However, sisters of ALL ages are encouraged to apply. The ATP is designed to train women from the grassroots community to become effective health policy activists and advocates. http://www.cabwhp.org/  

Nita took this training program and it has been of great benefit to our Sickle Cell Community already.  It lead to our assistance in the passing of AB52!!!

Future Project/Activities

 

MUSIC:   There are many artists who are or have family members diagnosed with Sickle Cell.

We undetstand the stigma attached to Sickle Cell and why everyone does not wish to come to the forefront.

More so, we appreciate those who come forth and share Sickle Cell with the World!

We ask that you:

"Please" support the Artist who support Sickle Cell!!!

Highlighting :

1.  TheSeKondElement's

http://thesekondelement.bandcamp.com/album/the-kommencement-lp

http://thesekondelement.bandcamp.com/track/closer-pt-ii http://www.offbeat.com/2010/08/01/thesekondelement-the-kommencement-independent/ http://peerdreams.com/pal  

2.  Darlene Smith – Mom of three boys diagnosed with Sickle Cell.  Her gospeljazz CD Delivered By Love is wonderful gift of music!!!  http://darlenesmithmusic.com/images/middle.swf

3.  Bone Davis -  GUTTER CHILD is bone's latest hit!

http://bonedavis.com

4. Jody Johnson - An Adult person diagnosed with Sickle Cell.

http://www.myspace.com/drivenbyc

http://abcpreachers.ning.com/profile/JODYJOHNSON?xg_source=profiles_memberList

     ONGOING ACTIVITIES

Below are the activities with no ending date

Ongoing:

SO Cal Adult Sickle Cell Support Group "Unveil Sickle Cell"

 

Sickle Cell Disease/White House Luncheon ~ Letter Writing Campaign

SCD Soldier Network

"Unveil Sickle Cell" :                                                             SO California Adult Sickle Cell Support Group

 

Volunteer opportunities.  There is a lot that takes place to put these individual events together for September.  Contact ABella Aptekar if you would like to be placed on our volunteer list.  There are several opportunities throughout the year and definitely all throughout the month of September.  Email or call Bella at:  Bella@gilderfluke.com or 818 840 9484.

Sponsorship opportunities.  If you, or if you know someone, that would be interested in sponsoring one of our Unveil Sickle Cell 2011 events, let us know.   We are always in need of water donations, cash donations, and items that we could either raffle or give away during the events.   For example, if you or if you know someone that works at a travel agent that could give us a trip for two to a nice destination, spa tickets to Glen Ivy, or dinner for two at a swank restaurant, we would be most appreciative. Contact Bella Apteka

Sickle Cell Disease/ Dominique Friend -Support White House Luncheon Project

UPDATE!!!

This project is almost a reality!!!  What is needed from you is to:

 Tell your story, and send to Dominique Friend (sickle1000@yahoo.com0

 

Dominique Friend -Support White House Luncheon http://www.youtube.com/watch?v=wZldNXUkjgQ&feature=email

 
http://www.youtube.com/

sickle1000 has shared a video with you on YouTube:

Contact me at sickle1000@yahoo.com or visit us at http://www.sickle.us/

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From:  Dominique Friend Email: sickle1000@yahoo.com 

Hi Friends and Supporters,

1. Please read the letter below and send to:


socialoffice@who.eop.gov;

firstladyscheduling@who.eop.gov;

scheduling@who.eop.gov

2. Forward to your contacts and ask them to do the same.
3. Please CC me on your action and the first 25 to do so I will place you on my guest list.
4. Please feel free to add your name but keep contact info the same.
5. Please advise if you would like to be on the White House Committee. 

Together we will impact the world, thank you for your continue support.

Please assist me with this great endeavor. Thank you so much.

Dominique Friend
 
  
Message ----
From: Dominique Friend <
sickle1000@yahoo.com>
To:
socialoffice@who.eop.gov; firstladyscheduling@who.eop.gov; scheduling@who.eop.gov
Sent: Friday, July 17, 2009 1:54:27 PM
Subject: Sickle Cell Disease/ White house luncheon

                                                                July 17, 2009
 
The Honorable First Lady Michelle OBama
1600 Pennsylvania NW
Washington, DC  20500
 
Dear First Lady Michelle Obama,
 
As part of my national campaign to raise awareness of Sickle Cell Disease, I am requesting your aid in the hosting of the 1st Annual Sickle Cell Luncheon in which, I am also requesting that this vital occasion be held at the White House.  This event should be held in Honor of Sickle Cell Awareness (September) at a date and time most convenient with your demanding schedule.  The featured book is Sickle, A Personal Story of Pain, Purpose and Perseverance, my memoir of life with Sickle Cell, but my purpose in this appearance is much larger than discussing my book.  I want to counter the current status of Sickle Cell as an "invisible" disease by spreading the word that Sickle Cell Disease still affects almost 1 in every 350 African Americans, as well as many Americans of Central American, Cuban, South American, and Mediterranean regional ancestry and that there is still no highly effective treatment or cure in sight. 
 
As you may know, Sickle Cell Disease is a group of inherited red blood cell disorders in which the red blood cells become hard, sticky and curved.  These cells die early, causing a constant shortage of red blood cells.  When they travel through small blood vessels, they can get stuck and lessen blood flow.  The result is often severe pain and development of other serious health problems, some of which can be deadly.
 
In 1949, Dr. Linus Pauling and his colleagues discovered that Sickle Cell Disease is caused by a mutation in the hemoglobin molecule.  It was the first time that any disease was linked to a specific genetic marker.  Today, almost seventy years later, only one drug treatment has been identified, and that treatment, itself, increases the need for transfusions.  Seventy years after identifying the cause, we should have safer treatments for the nearly 100,000 Americans who are living with Sickle Cell Disease!
 
As an vigorous and esteemed member of this Nation, your hosting of the 1st Annual Sickle Cell Luncheon - will signal the importance of this topic, and will help us draw attention to the need for research that supports better treatment and searches for a cure.  If you can spare some time in your no doubt busy schedule, I would be grateful for your presence at this event and for your involvement in this effort to inform the community about Sickle Cell Disease.
 
If you have any questions about the event, please feel free to telephone me at (717) 793-6294 or contact me by email at
info@sickle.us . If you are interested in reading an excerpt from the book, please visit the Sickle website at www.sickle.us .  Thank you for your attention and for your kind consideration of this request.
 
Sincerely,
 
Dominique Friend

SCD Soldier Network

We are keeping Phyllis in our prayers as she faces her medical challenges.  She is just on vacation . . . . 

 

Phyllis Zachery-Thomas, Founder & President of SCD Soldier Network.

(404) 933-1838       przthomas@yahoo.com

The SCD Soldier Network is comprised of people with SCD, family members, medical professionals and others who support the idea of bringing greater awareness of Sickle Cell Disease.  We are advocates who educate, counsel, support and care for those who are in need of assistance. We are the adult face and voice of sickle cell disease. Our Front-Line Soldiers are in the trenches doing the hands-on advocacy work.

We are an army of people who are going from the Church House to the White House telling the nation that we exist and we are making sure that our community is cared for.

Where there is ignorance, we educate. Where there is injustice, we tip the scales. Where there is confusion, we clarify.     Where there is pain, we pray because we believe that God is able to turn our weeping into joy.

We are attempting something that has never been done before and we are encourging those with SCD to speak up and stop fighting this disease alone.  We are bringing support to the families of these indivduals and telling the nation about our plight.  If we are needed, we will come from everywhere!

If you are interested in becoming a SCD Soldier please fill out the information card on the recruiting station page of this website. You may also send an email stating who you are and the level in which you would like to serve. Email your request to: recruiting@scdsoldiernetwork.com

If you would like to become a client and access services when they become available send your request to: clientservices@scdsoldiernetwork.com 

If you would like to partner with us you can fill out the form on this page or send an email request to: partners@scdsoldiernetwork.com

If you would like to offer your services or goods free of charge you may fill out the form on this page or send an email to: supporters@scdsoldiernetwork.com

SCD Soldier Anthem: www.youtube.com/watch?v=5Gl02eTMmx8

SCD Soldier Network - VideoBlog Week Two: www.youtube.com/watch?v=o_EEWnZLVo4

 

 

INTERNATIONAL

Please Help Haiti

In your fundraising efforts, maybe you could have some funds designated for Sickle Cell patients?

The Sickle Cell Community is very concerned because one of the Sickle Cell activists that has been very active in helping with a project Nazaire is from Haiti.

 If two former presidents can get together for this why can't we?   http://www.sicklecellart.com/

I know that it is HARD to raise money that is needed for Sickle Cell Disease, but if you have not already I urge you to send money through organizations or even through your organization to Haiti.

So that this is not different from your "MISSION" you can start to prepare to help those Sickle Cell patients in Haiti.

As you know Haiti is one of the poorest countries in this hemisphere.   You know the challenges people in America have with getting help for Sickle Cell Disease imagine what is happening there.

 
 
 
1989Pegelow C H
Increased incidence of bacteremia in Haitian children with sickle cell anemia.

Southern medical journal 1989;82(7):833-6, 840.
Children with sickle cell anemia who were less than 5 years old were observed over a three-year period.
 
Those born to recent Haitian immigrants accounted for 108.4 patient-years. They had seven episodes of Streptococcus pneumoniae bacteremia and five due to Haemophilus influenzae for rates of 6.5 and 4.6 episodes per 100 patient-years, respectively.
 
Children born to American parents were observed for 131.3 patient-years and had three episodes and one episode, respectively, for rates of 2.3 and 0.76 episodes per 100 patient-years. The differences in the overall rate of bacteremia were significant (P less than .015).
 
Leukocyte counts and percentage of erythrocytes with pits, indicating decreased splenic function, were similar for the two groups.
 
The Haitian families had lower annual incomes, but values for both groups were so low that theirdifference is unlikely to be related to the increased infection rate.
 
Although no cause for the higher rate of bacteremia could be found, the approach to febrile illness in Haitian children with sickle cell anemia should be even more aggressive than usual.
 
In addition to Haemophilus influenzae immunization, antibiotics effective against penicillin-resistant species should be used in the initial antibiotic coverage of their febrile illnesses.
Nichole J. King-Campbell
_________________________________________________________

Past Activities

Due to the limited space on this free site we had to remove all Past Activities information, however we do have it saved incase someone wants to receive the information, just send us an email request.  Nita T.

Upcoming Events

Monday, Jun 19 All Day
Friday, Jul 21 at 8:00 AM - Tuesday, Jul 25 4:00 PM
Tuesday, Jun 19 All Day
Saturday, Jul 21 at 8:00 AM - Wednesday, Jul 25 4:00 PM

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