Sickle Cell Disease Awareness
A candle loses none of its light by lighting another candle!
Activities: Sharing the Information
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:
Present and past Dated and Ongoing Activities:
*Please note: Form and flyers can be copied by right clicking on them, click copy and paste onto a word document. There you can increase the size of the form for easy reading and filling out!
Present Activities
Open Letter
Hey all,
I just wanted to share with you three things and the facts learned last Friday at the Real City Hall Workshop as to why the City of
I. The following is an email that went out from the
To my dear friends,
I know I have been contacting some of you recently begging you to donate blood or platelets for one our kids. It has not been an exaggeration. The need for blood here at
"In the last 2 weeks we have had 4 patients on ECMO…and big ones, one was a 16 year old who used 40 units of blood by himself! We now have a 13 year old 75 kilo patient on ECMO! It seems that this procedure is very popular right now to help our patients in great distress with the flu!
Everything we have been collecting is flying out of the blood bank and into the patients. We always have a great demand for type O units, but I was informed recently that we have a shortage of type A blood…I can’t remember when this has EVER happened.
I think with the flu season we can be prepared for some very sick kids who will need unusual amounts of blood, so please continue to get rest and stay healthy so you can maintain your flexibility, good humor and support for these patients.
Thanks again for supporting each other in these trying times.
Please try to keep cool at the blood drives also!
Aileen"
We could not treat these children with you. If you would like to come in to donate, please call 323-361-2441.
Thank you
Patricia Leblanc
323-361-2339 PLeBlanc@chla.usc.edu
II The following is a Feb 09 LA Sentinel Article
Our Black Children Need Blood
Written by Danny Bakewell Jr., (President & Executive Editor), on 02-26-2009 00:00
Organizations join Sentinel for massive March 13-blood drive
Several community organizations and Children's
The Southern Christian Leadership Conference of Greater L.A., the Brotherhood Crusade, Mothers In Action, the New Frontier Democratic Club and Kappa Alpha Psi have pledged their support to reach a goal of attracting 500 blood donors.
"In these difficult economic times people are not capable of making financial contributions, but this is a way of helping out our children without giving any money," said Sentinel Executive Editor and Vice President Danny J. Bakewell Jr.
One in 400 African Americans has sickle cell disease and
Sickle cell children require blood that is a more exact match for different sub group types. If the blood these children receive is not closely matched, they can reject the transfusion, which could ultimately threaten their chances to live.
An estimated 55 percent of African Americans blood type is C, P, E or K negative, compared with just 22 percent of whites.
Donors of the same ethnic background will more closely match the recipient, and African American donors will more closely match African American children with sickle cell, according to the researchers.
Organizers are urging all organizations and villages to help save the life of children stricken with sickle cell by participating in the blood drive.
That is why I am calling on every Church, Fraternity, Sorority, Social Club, Community Based Organization, every politician, pastor, community leader or community servant, every Christian, Muslim, Protestant or Jew, Mother, Father, Sister or Brother. Young (you must be at least 17 yrs old) and old--join me here at the Sentinel on March 13, 2009 anytime between the hours of 7:30am and 3:00pm for OUR Community's
Please call the Sentinel today, sign up your organization, your family and your friends. Tell everyone and anyone you know. This needs to be an event like none we have ever had, "a do good in the hood rally." We came together to elect President Barack Obama and we came together to party and enjoy the festivities at Taste of Soul. Now I am calling on you all to come out and SAVE THE LIVES OF OUR CHILDREN!
Call today and sign up at 323-299-3800 or email me at savealife@lasentinel.net. This email address is being protected from spam bots, you need Javascript enabled to view it. When our community needs help it is our people who need to be the first to step up!
III These are two email replies I got back from CHLA:
Dear Nita,
So kind of you to help us! We see patients from all races. Over 50% of our kids are from minorities which can range from Native American to Mongolian. We had a few kids brought in by the Mongolian Embassy to have open heart. Mostly our kids are African American, Hispanic, and White. Our kids need about 1200 donors per month. The newborns in the ICU use over 50% of the blood. Newborns cannot use blood older than five days.
And
Hi Ms. Nita – I have many African Americans and several Latino patients receiving chronic blood transfusions (Blood transfusions every 2 weeks, 3 weeks, or 4 weeks) as you know. As always thanks for all your work – it really is appreciated!
So . . . .
My question to everyone is why do we have to beg people to help SAVE THE LIVES OF OUR CHILDREN, ADULT SICKLE CELL PATIENTS and others? Christ, shed his blood and died for each of us! They just need some of you blood on a regular basis and I request that you become a marrow donor in hopes of matching a person within your same race and curing them of one of the few diseases that can be cured by your bone marrow or stem cells.
Lets start at
Lets talk . . . . and thank you for reading,
Nita T.
Sickle Cell Activities/Calendar ~ Reported by State:
California
Dated:
Volunteer Opportunities:
On Monday, December 7th from 10 am - 2 pm, we will be sending out our 2010 trifold brochures and we need help! Please call or email Amy to let her know who will be in attendance to come and stuff, place labels and postage on envelopes. Great way to meet new people. Here are the details:
Location: Gilderfluke & Co., Inc •
Time: From 10 - 2 pm Contact: 818 840 9484 (Amy or Dr Rowley)
Ongoing:
SO California Adult Sickle Cell Support Group "Unveil Sickle Cell" 2010:
Sickle Cell Activities/Calendar ~ Internationally:
Dated:
Sickle Cell: The Next 100 Years
Wednesday 14 April to Friday 16 April 2010
De Montfort University,
Submit your abstracts for the conference and it could be featured in
Ethnicity & Health Journal.
Sickle Cell: The Next 100 Years will mark the 100th anniversary since Dr James Herrick published his first observations on ‘peculiar elongated cells’ - what is now known as sickle cell disease.
The conference will mark the 100th anniversary since Dr James Herrick published his first observations on ‘peculiar elongated cells’ - what is now known as sickle cell disease.
This unique three-day conference will bring together a selection of papers, offering delegates the chance to explore the social scientific research currently being carried out around the world.
Delegates can submit an abstract for the conference for an opportunity to be featured in a special edition of Ethnicity and Health, due to be published in 2011. We warmly welcome those who simply wish to attend the conference.
The conference will include talks from four keynote speakers:
- Professor Kwaku Ohene-Frempong (USA/Ghana)
- Professor Karl Atkin (
- Dr Jemima Dennis-Antwi (
- Professor Simon Dyson (
Plus - reserve your place at the conference dinner and experience an endless array of Indian cuisine at the Feast India restaurant. Sign up for our historic ghost walk and discover the history and monuments that surround De Montfort University’s campus.
Book Sickle Cell: The Next 100 Years
For further information about the conference, to register a place or to submit an abstract please visit our Sickle Cell: The Next 100 Years web pages, email conferences@dmu.ac.uk or telephone 0116 250 6215.
Please circulate to your colleagues.
Past Activities
Below are all of the past activities that will repeat the following year. Just FYI.
Dated:
First Global Sickle Cell Disease Awareness Month Online Marrow Drive ~ September 1 thru Sept 30, 09
Women in Pain Conference ~ FREE! ~ Fri., Sept. 18, 09 ~ Day
KiKi’s 6th Annual “Celebrity Bowling Challenge ~ Fri., Sept. 18, 09 ~ Nite
Sickle Cell Awareness Month National Walk-A-Thons / Runs ~ Sat., Sept. 19, 09
SCDAA ~ 37th Annual Convention "Building Bridges for Change" September 30 - October 3, 2009
Sickle Cell Month Activities/Calendar ~ Reported by State:
Los Angeles CA Activities!
Dayton Ohio
Ongoing:
Sickle Cell Disease/White House Luncheon ~ Letter Writing Campaign
First Global Sickle Cell Disease Awareness Month Online Marrow Drive ~ September 1 thru Sept 30, 09
In observance of September, Sickle Cell Disease Awareness Month, to globally increase awareness about Sickle Cell Disease and Trait; increase funding to develop more adult comprehensive treatment programs; also blood, tissue and cord blood donations we are hosting the “First Online Global Marrow Drive for September ~ Sickle Cell Disease Awareness Month,”.
Directions for the First Online Global Marrow Drive for Sickle Cell Disease Awareness:
- Go to Bethematch.org
- Go to join registry
- You will be asked a series of questions
- When prompted for the “Promo CODE” enter SCDAM09
- You will be prompted to fill in the consent form
- You will be sent a swab kit in the mail and will need to mail the swab kit back to the
address already provided on the envelope.
DATE: Anytime between September 1, 2009 thru September 30, 2009
TIME: Day or night!
LOCATION: Globally! Since it’s Online register when it’s convenient!
CONTACT: Shelley D. Baker, Account Executive Be The Match Registry @
If you do not meet the eligibility for joining the Be The Match registry, there are many ways you can help. Consider assisting with future marrow registration drives or becoming a Volunteer Ambassador.
Women in Pain (ALL TYPES OF PAIN ) Conference:
2nd Annual CME Women in Pain Conference:
“Gender Matters-Building Bridges to Optimum Care"
FREE CONFERENCE!!! REGISTER NOW!
Date: | September 18, 2009 |
Time: | 8:30am – 4:30pm |
Location: | |
| |
|
RSVP online at http://www.haaf2.org/
Or call (323) 292-2002
CME’s and CEU’s will be provided
Who should attend?
Women in Pain ♦ Community Members ♦ Researchers
Healthcare Providers ♦ Service Providers ♦ Students
Caretakers ♦ Organizations ♦ The Faith Community
KiKi's 6th Annual "Celebrity Bowling Challenge Sept 18, 09
Friday, September 18, 2009
Bowling Tournament/Party 8:00pm – 1:00am
For more info:
KiKi’s Celebrity Bowling Challenge, ‘09
c/o: The K.I.S. Foundation Inc.,
Phone/Fax: 818.981.7819 Email: info@thekisfoundation.org
*Copy by right clicking on flyer, click copy and paste onto a word document. Resize for easy reading and filling out!
MISSION STATEMENT
To inform and educate the public and raise awareness about Sickle Cell Disease through community outreach programs and educational scholarships. We will also financially help support the efforts of research institutions to find a universal cure.
The KISF is actively pursuing federal, state, and private grants to fund the following programs designed to benefit the SCD Community.
1. Women’s Prison Outreach Initiative
2. Performing Arts and SCD Educational Leadership Program.
3. The By Your Side Sickle Cell Disease Transition Program, (BYSSCTP)
Sickle Cell Awareness Month National Walk-A-Thons / Runs
Contact: National Sickle Cell Walk Partnership Grows Stronger (New York and Washington, D.C. - March 6, 2009) The National Sickle Cell Walk Partnership invites members of the community to join its effort to unify families, community organizations and health care providers across the U.S. by walking in solidarity on Saturday, September 19, 2009 to increasing public awareness of Sickle Cell Trait and Sickle Cell Disease as part of NATIONAL SICKE CELL AWARENESS MONTH in SEPTEMBER. The National Sickle Cell Walk Partnership (NSCWP) is asking for civic/social organizations to Have A Heart For Sickle Cell and join the growing coalition of organizations walking to raise funds for support services, scholarships and research to find a cure for hemoglobin disorders. Your participation will strengthen Sickle Cell Advocacy nationwide. The Sickle Cell/Thalassemia Patients Network initiated the Northeast Walk Partnership between New York, Connecticut, New Jersey and Pennsylvania in 2007. Washington, DC and Maryland joined the Partnership in June of 2008 from there this grassroots collaborative grew into a national campaign of community organizations and families hosting walkathons and Virtual Walks© across the country on the same day. Aside from standard walks in park, on track fields and in stadiums, NSCWP implemented the Virtual Walk©, an effective low cost way for interested parties to host walks when they do not have access to resources to host actual walks. Walk organizers partner with community gyms or health clubs and use treadmills to fulfill the 5 mile walk requirement. Pledges are solicited and collected in the same way as a regular walk. All contributions are tax-deductible, and proceeds benefit the National Sickle Cell Walk Partnership and participating member organizations. “When calling across the country, we found many organizations in jeopardy of closing. The Virtual Walks were created to give these organizations a real chance at raising money to stay open and serve their communities”, says Nichole King-Campbell, NSCWP co-founder. For more information on Sickle Cell Disease visit http://www.sctpn.org/. To join the National Sickle Cell Walk Partnership email us at membership@nationalsicklecellwalk.org.
SCDAA ~ 37th Annual Convention "Building Bridges for Change" September 30 - October 3, 2009
The discounted cost for Sickle Cell patients or their family members to attend is $150.00
Sickle Cell Disease Association of America, Inc.
37th Annual Convention "Building Bridges for Change"
Abstracts Due August 3, 2009
September 30 - October 3, 2009
Caribe Royale Orlando, Orlando, FL
Convention and Hotel Registration are available on-line. Please visit www.sicklecelldisea
Complimentary tickets for an afternoon visit to The Holy Land Experience
Friday, October 2nd from 1:30 - 6:30 p.m.
A limited number of tickets are available to individuals with sickle cell disease and their families on a first come, first serve basis, with a maximum of four tickets per family.
Caribe Royale Orlando
All Suites Hotel and Convention Center
8101 World Center Drive
Orlando, FL 32821
(407) 238-8000
ROOM RATES (per night):
Standard King: $119 Queen Double: $119
King Deluxe: $139
Villas: $244
Executive Suite: $319
All rates are net and subject to state and local taxes
GROUP CODE: SICKL
Sickle Cell Disease Association of America, Inc.231 E. Baltimore Street
Baltimore, Maryland 21202
410-528-1555
If you are anywhere near us you are welcomed to attend!
August 8th- Walk-a-thon in
August 12th- Sickle Cell Consurtium Meeting
September 12th- Sickle Cell Awareness and Family Day
September 28th- City of
SC Highlights Dayton, Ohio
1. The DSCAFA is hosting the September "RAP Session" (Sickle Cell Support Group) on Thursday, September 17, 2009 @ 6pm @ Dayton Childrens Medical Center (Room PDR-A...across from the cafeteria). The life insurance representatives that presented at our August session have agreed to return, due to the interest of attendees and as an
opportunity for this insightful information to be shared with others that were unable to attend in August. DSCAFA is hopeful that you will attend the September "RAP Session", as we don't want anyone to miss out on the opportunity to receive information that could prove beneficial for Sickle Cell survivors and their families. Thank you for your attention and DSCAFA looks forward to seeing you on Thursday, September 17th, 2009 @ 6pm @ Dayton Childrens Medical Center.
2. On behalf of Dayton Sickle Cell Affected Families Association, Inc. (DSCAFA) and West Central Ohio Comprehensive Sickle Cell Center (WSOCSC), congratulations Alexis Frazier for being a recipient of the 2009 Empowerment Scholarship, per OSCHA. By receiving this honor Alexis will be able to attend the 2009 Sickle Cell National Convention in Orlando, Florida.
Los Angeles CA Activities!
September is National Sickle Cell Month Events Sponsored by the Adult Sickle Cell Support Group & the SCDFC Saturday, August 29th 10:00 am – 2:00 pm Unveil Sickle Cell Kick-off Rally Edward Vincent Park, 700 Warren Lane, Inglewood Saturday, August 29th 3:00 – 5:00 pm Adult Support Group Meeting SCDFC, 6133 Bristol Parkway, #240, Culver City Thursday, September 3rd 7:00 – 9:00 pm Adult Support Group Meeting Cayenne Wellness Center, 208 S. Louise St., Glendale Saturday, September 5th 5:00 – 9:00 pm Dinner and a Movie ($20 per person) A Cultural Affair Café,1330 N. La Brea Ave. Los Angeles Saturday, September 12th 10:00 am – 3:00 pm ??? Brunch with the Experts: Adult SCD Conference The Grand, 4101 E. Willow Street, Long Beach Sunday, September 13th 11:00 am Rejoicing Life: Unveiling Sickle Cell and Candlelight ceremony in memory of persons w/SCD First Presbyterian Church, 1809 West Blvd., Los Angeles Saturday, September 19th 10:00 – 11:00 am The Emerging Face of SCD: Educated, Employed & Living Longer - Lucy Florence Coffeehouse, Leimert Park, 3351 W. 43rd St, L.A., Los Angeles Urban Policy Roundtable hosted by Earl Ofari Hutchinson Saturday, September 19th 1:00 – 4:00 pm Town Hall Meeting for Parents of Children w/SCD 1:00 pm – Navigating the School System with SCD 2:00 pm – Adults with SCD talk to Parents Gladys Waddingham Lecture Hall (Inglewood Library) 101 W. Manchester Blvd, Inglewood Sunday, September 20th 3:00 – 5:00 pm SCD Educational Session Trinity House Church, Pastor Ron Smith 11222 S. Main Street, Los Angeles Friday, September 25th 11:00 am 14th Annual SCDFC Golf Classic ($150 per golfer) Green River Golf Club, 5215 Green River Road, Corona Saturday, September 26th 11:00 am – 4:00 pm Meet and Greet Picnic Edward Vincent Park, 700 Warren Lane, Inglewood Sickle Cell Adult Support Group of Southern California, 208 South Louise Street, Glendale, CA 91205, U.S.A. 818 377 5120 or email us at amy@gilderfluke.com. Sickle Cell Disease Foundation of California 6133 Bristol Parkway, Suite 240, Culver City, CA 90230 Phone (310) 693-0247 ▪ Toll Free (877) 288-CURE ▪ Fax (310) 693-0266 Email: info@sdfc.org ▪ Website: http://www.scdfc.org/
For more information:
Sickle Cell Disease/ White House Luncheon
From: Dominique Friend Email: sickle1000@yahoo.com
Hi Friends and Supporters,
1. Please read the letter below and send to:
socialoffice@
firstladyscheduling
scheduling@who.
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.
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.
