Welcome To Success with SCDAM

Welcome to our website and to the place where we can all find success in our life journey.  SCDAM stands for the Sickle Cell Disease Advocates of Minnesota. We are grateful that you have stopped by. Read on as we tell you what we do, what we stand for and what your role is in the matter if you choose.

Sickle Cell Disease is an inherited blood disorder that results in a chronic disease, affecting people throughout their life.  In the United States, most patients with Sickle Cell Disease are of African, Hispanic or Mediterranean descent. While Sickle Cell Disease is most common in these populations, people of all ethnic backgrounds can have Sickle Cell Disease.

It is estimated that more than 70,000 Americans have sickle cell disease and more than two million Americans have sickle cell trait, meaning they carry one copy of the gene for the disease.  Each year, about 2,000 infants are diagnosed with Sickle Cell Disease by neonatal screening programs across the United States. Approximately 15 babies with Sickle Cell Disease are born each year in Minnesota. About 1 in 500 African American babies, and 1 in 1,000 to 1,400 Hispanic babies are diagnosed with Sickle Cell Disease each year in the United States.

Many people living with Sickle Cell Disease are fully capable of leading productive lives.  Like any person without this condition, they set and achieve many academic, professional and personal goals.  However, throughout their lives they experience challenges including episodes of severe pain known as “crisis”, chronic pain, physical complications, frequent hospitalization, health provider inexperience, as well as social challenges like housing and employment.  Many people living with Sickle Cell Disease, as well as their families, are in need of support, understanding and advocacy.

The Sickle Cell Disease Advocates of Minnesota – SCDAM exists to improve the quality of life for people living with Sickle Cell Disease by identifying resources, providing support and creating awareness. We aim  to become a respected full-service agency with sufficient resources to support the needs of people and their families living with Sickle Cell Disease (SCD) and to achieve a society that is aware of SCD. These aims can be acieved through dedication and a consistent focus on making and achieving little milestones that will eventually culminate in the big picture that this organization seeks.

We are a registered non-profit (aka 501(c)) and donations to this organization is tax deductible. Please donate to help us effectively carry out our yearly calendar of events. Donate here

Other ways inh which you can help include becoming an advocate here, or volunteering to help us in any of our numerous tasks including fundraising, website administration, communication facilitation and event organization. You can also help us by reading the educative material found on this website and telling one person about us. We would also love you to link to us and register to attend one of our numerous events throughout the year. We also welcome comments and contribution of articles and personal life experiences. If you want to have a regular column where you write about sickle cell disease and related material, this is the right place.

Take a few moments to explore this site and add it to your bookmark! See you inside.

 

  • http://[email protected] PAMELA

    I AM THE PRESIDENT OF MY SICKLE CELL CHAPTER. WOULD LOVE TO TALK TO SOMONE 239-810-7918

  • http://www.help-arty.net Margit Heald

    Hello! My name is Margit Heald. My brothers name is Arty Heald. Arty was recently diagnoised with a rare form of kidney cancer that is associated with SCD. My nephew also carries the SC trait. My brothers kidney has since been removed however, the cancer had already spread to his lungs. He is currently receiving chemo to fight the cancer and luckly for us the chemo has helped. We are all new to SCD and know very little about it. I am looking for resources to help my brother and our family through this tough time. I have included my brother’s webpage to this reply. Any help would be great. I was also wondering if SCDAM does any 5k walks or any other awarness fundraisers?
    Thanks in advance for any information.
    Margit Heald

  • Sherry

    Hello,
    I am a proud grandmother of 8 and have two granddaughters who have struggled with this disease. One granddaughter had a transplant a few years ago and is now disease free but still has the trait; the other with prayers will go through the bone marrow transplant sometime 2011. In the past years Sharon (other grandmother) and Norma (great grandmother), and I have been advocates (Grandma Advocates for Sickle Cell Disease) in helping to raise money and awarness to help my daughter and her husband raise money to help with medical expenses. Both have been on continued battle with insurance companies as well. Most times, we grandmothers have been advocating and funding raising in Des Moines, Iowa, in which I am orginally from. In the past I have contacted the Sickle Cell Disease Association in Illinois for information, brochures, etc. to handout. I would like to know more about the Association in Minnesota and to know if you also provide information for such events? At present I can be contacted via email at [email protected].
    Thank you for taking the time and reading this message.

  • Linda

    I am so happy to see this website up. Are there any events organized by your organization to raise awareness of SCD in the twin cities? I would love more information about this if you have it. Thanks!

  • http://www.health.state.mn.us Nancy Vanderburg

    At an open house I met a woman from Ghana who is here is the USA for schooling. She has twins (three years old, I think) and the boy child has SCD. She told me she had never talked with another parent of a child with SCD. Is there someone in your group who would be interested in at least emailing her and providing some support. I know it would be difficult because her situation is so different with her child not being here and not having access to medications and only has emergency care a distance from the grandmother (who is caring for the children now).

    Here is what she emailed me, “Thanks so much for the wonderful time you shared with me and our educative conversations. I really enjoyed talking with you. I’m so grateful for everything. I was really tired of trying to connect myself with the internet on this issues because they always refer me to see a doctor with my child. That is the main reason I want to network with somebody personal who is leaving with it or having a child like that. Since, I came in August, I’ve searched and combed the internet but have almost the same answers. As you know, I don’t have my child here. Very frustrating.”

    Do you know of any family in your group who could relate to her?