How to Join Sickle Cell Trials & Studies

Have you ever wanted to enroll or participate in a research study or program involving sickle cell and didn't know where to start?

Well Veronica (of Break Sickle Silence) shared with us on the Sickle Cell Warrior Facebook page a valuable website that I just had to share with all of you.

Go to http://clinicaltrials.gov and do a search for "Sickle Cell" and your location. This will bring up all the government sponsored SCD trials close to you. You can narrow the results by those Actively Recruiting, choose the one that you are interested in, and then more info of the study, and contact info will open.

It might take some searching to find the best program for you...but if each of us participated in just one study in our lifetime, then we are actively helping find a cure to sickle cell! Be a part of the solution darlings!

I did a preliminary search, all you have to do to get started is click right here.

Sickle Cell Award

Dear Sickle Cell Warrior,

You have been identified as a leader in the Sickle Cell Anemia community. By sharing your personal, first-hand experiences with this disorder on your blog (Sickle Cell Can Kiss My A**!!!), you have helped others. AccessDNA's mission is to help increase the awareness of both rare and common genetic disorders by creating accessible and reliable information on genetic conditions. We respect your efforts and are privileged to distinguish your blog with the following award:



Thanks again, and we look forward to working together to improve disease treatment and management options!

Jordanna Joaquina, MS, CGC
Director of Genetics and Co-Founder
www.AccessDNA.com

Awwwww....thanks! I'm just doing my part in raising sickle cell awareness. I appreciate the honor.

Sickle Cell Advocacy & Activism

This week, I got a chance to speak with Phyllis Thomas, the founder of the SCD Soldiers Network which is an Advocacy Group for Adults with Sickle Cell Disease (AGASCA). The SCD Soldier Network enables the sickle cell community to be advocates for each other. The beautiful part of this organization is that it's driven completely by volunteers like you and I.

To reduce the ignorance and stigma that people with sickle cell face, each of us have to be the voice, and the face of sickle cell to our peers, colleagues, friends, family and community. The SC Soldier Network will give you the tools to educate those around you.

Support Soldiers disseminate information in their communities, make referrals to the organization of patients that need AGASCA services, and attend AGASCA events in their area.

Front Line soldiers are charged with teaching, advocating, intervening and lobbying for change in the lives of the SCD patients they come across.

"They do the hands-on advocacy work. They also support those in need of care when in the hospital. They visit patients, provide meals for the families who are headed by a client who is sick. There are a variety of services that they will provide."

I just registered to be a Front Line Soldier for my community and I need you to register as well. Ghandi said, "Be the change you want to see in the world." We want the public to treat us differently, we want more information about sickle cell available to the masses, we want advocacy and support when we are sick. So instead of waiting for someone to do this for us...let us join together and do it ourselves. Join AGASCA today.

Sickle Cell Advocates & Activism

Hello fabulous warriors!

Okay, everyone here has gotten something from the sickle cell online community in one way or another. Now here is your chance to participate and help others with knowledge the same way you have been helped. Remember, we are the only ones that can change the way the world views sickle cell warriors, and we do this by starting in our circle of influence. Here are a few organizations, surveys and communities that need your input to grow and effectively serve us.

Phyllis Bazen, a Nurse Practitioner from the University of Rochester is seeking those with sickle cell to participate in a research study that focuses on factors of stress that sickle cell patients have. I have already participated in this study...and she just needs 103 candidates, so please, no matter where you are in the US, check out the website; email, call or contact Phyllis to join the study. It doesn't take long, just 1 hour, and you have the satisfaction of knowing that you helped to improve the sickle cell body of knowledge (also, for completing it, you get $20). Check it out at http://www.scdstresstudy.com/

The SCD Soldier Network is currently recruiting people who would like to help promote advocacy programs for adults with Sickle Cell Disease. Fill out the information card on the "Recruiting Station" page and you will be contacted in order to determine where you fit. Our primary function is to provide assistance whenever a person with SCD feels as though they need help with an issue that has arisen as a result of the disease.

• Employer Conflict Resolution
• In-Patient Conflict Resolution
• Consultation
• Education
• Outreach

You do not have to have the disorder in order to join....Visit http://scdsoldiernetwork.com for more info!


WEGO Health is creating a sickle cell network for sickle cell advocates and warriors to connect, so please head over there and join, start your profile and help grow the community. In addition, for those sickle cell activists (YES, THAT DOES MEAN YOU!), that are interested in joining a focus group related to studying the current trends in sickle cell research, please fill out this survey.

To be featured in next weeks' edition of Advocacy & Activism, please send me information about your cause, research project, survey or community. Remember, we all must do our part to bring awareness to the populance and end the sickle cell stigma!

Sickle Cell Documentary Photo Collage

Project Hemoglobin S December 17 at 1:13am Report

Our Documentary needs faces!
We have a collage we're featuring in our film of Sickle Cell Survivors! If you would like to have your picture featured in our film during our collage of Sickle Cell Survivors Contact Us! We'd Love to have you! Let the world know you have Sickle Cell, Sickle Cell does not have you.

The process is simple:
Email us stating your interest
We forward you a release form
Take a cool picture of yourself, scan it and submit it to us as a jpg or bitmap file along with the release form allowing us to use your image in our film and that's it!

It's all that simple!

Submissions go to :
docprjtquery@demarfilms.net

American Society of Hematology Conference

I know it's probably late for anyone to travel there, but if anyone is in New Orleans...this conference just might be for you ~ by the American Society of Hematology.

I thought you and Sickle Cell Can Kiss My A** readers might be interested in learning about some of the cutting-edge medical research directly impacting today’s patients and tomorrow’s treatment options, including research on patients with Sickle Cell Disease and H1N1, soon to be presented at the ASH 51st Annual Meeting in New Orleans, taking place Dec. 5-8, 2009.


Leading studies and topics to be presented include:

· One less defense for women in the fight against recurrent miscarriages. An increasingly common treatment for unexplained, recurrent miscarriages – a regular regimen of aspirin or other blood thinners – has been found ineffective and only puts women at undo risk, according to new research.

· Sildenafil (the medicine contained in Viagra®) found dangerous for men with Sickle Cell Disease (SCD). New research demonstrates that using sildenafil (more commonly known as the medicine Viagra® and Revatio™) is not effective – or safe – for lowering high pulmonary blood pressure in patients with SCD. SCD is one of the most common genetic blood disorders affecting millions of people around the world.

· Defining the H1N1 profile: Patients with SCD at higher risk, in need of first available vaccine. H1N1 demonstrates a disproportionate incidence rate and increased risk of hospitalization among patients with SCD, according to findings from Johns Hopkins University.

· Advance Care Planning (ACP) linked to improved outcomes of patients with blood cancers. New study demonstrates the correlation between ACP and coping patterns and improved outcomes of patients with blood cancers.



We’d be thrilled if you’d be interested in sharing this late-breaking research and its treatment implications with your readers and those on the Sickle Cell Forum. If you’d like, I can also provide:

· Expert insight from study authors

· Full study abstracts and newly released research results

· Insights on the 51st Annual Meeting and background on the Society from hematologist and ASH President Dr. Nancy Berliner

· Patient points of view



For up-to-date information about the 2009 ASH annual meeting, follow ASH_Hematology on Twitter at http://twitter.com/ASH_hematology (also follow hashtag #ASH09), and please visit www.bloodthevitalconnection.org, which provides hematologist-reviewed information about common blood conditions, risk factors, preventive measures and treatment options to educate consumers on common blood conditions including:

· Anemia

· Bleeding Disorders

· Blood Clotting Disorders

· Blood Cancers

· Women’s Health Concerns