I have personally witnessed the leaders of the Sickle Cell Awareness Foundation speaking with patients and families at health fairs and community education meetings. They convey information about the disease that is jargon-free and easy to understand. Their dedication to advocacy on behalf of patients and families is sincere and has been effective; legislators have responded by recently passing a state law that will improve countless lives.
SCAF has been serving the borough of Queens for several years sharing information about Sickle Cell Disease. Even though SCAF membership is small in numbers their impact has been felt throughout the other boroughs as well. SCAF has been working with Elected Officials, Medical Professionals, Spiritual Leaders and Community Leaders to increase funding, treatment, awareness and support for victims of the dreaded Sickle Cell Disease.
As a non profit organization SCAF's main desire is to enhance the lives of patients suffering with Sickle Cell Disease.
The Sickle Cell Awareness Foundation Inc serves as a support system within the community. To educate those who weren't aware about the the sickle cell disease. The founders Mr. and Mrs Sotillo have made it their duty to educate not only those suffering, but health care providers who may not have much experience with dealing in sickle cell. I recommend anyone who has a family member or friend suffering with this disease to contact the Sickle Cell Awareness Foundation Inc.
This organization was started because of the love of family, while growing up I always see my sister go in and out of Hospitals, and I could not help her but I promised when I am old enough I will be able to do something, starting this organization is a blessing to my family, as we are able to offer an essential service to many families and individuals, educating and counseling them with a current understanding of sickle cell disease, and other genetic conditions. In addition, the community outreach regarding sickle cell disease has been outstanding. We believe that proper medical knowledge and good health is lifelong power. We work to bring people who are looking to get help, are looking to give help, or those seeking to learn more about sickle cell together, connect them with the tools and resources they need.
Our goal is to enhance the quality of life for people suffering from sickle cell disease and their families.
Sickle Cell Awareness Foundation Corp Intl, Was founded by Syd and Merlene Sotillo, we started this organization because he(SYD) and sister Cathy were tired of the treatment by ER and Hospital staff, Sickle Cell Disease can be devastating, people with SCD often experience debilitating pain episodes, entrapment of blood within the spleen, severe anemia, septicemia, meningitis, stroke, acute lung complications, acute chest syndrome, bacterial infections and other life threatening complications. It is a complex disorder, which can affect several of the body's system. It requires specialized comprehensive and continuous medical care to achieve the best possible health outcome for the individual. Currently, the most effective methods to treat or prevent the most severe complications are monthly blood transfusions, or where possible, a Bone Marrow Transplant. We provide Genetic counseling, blood drive, health fairs, 5 k walk/run, monthly support group, On April 20th of last year Syd passed away from complications of this disease, he was funny, loving, and a great motivator.
To my knowledge and what I know now about sickle cell, my cousin would have beeen alive as of today. I know that this organization "Sickle Cell Awarness Foundation Inc". is doing a great job of educating people in this world about this deadly disease which can affect anyone. It can be frustrating, tiring, and draining to each and every family who is going through with this diseases but with this organization existing will help family members to cope. Having good resources and strong support will help fight this disease. Hope the organzation will continue to bring awareness to those out there who are seeking for help because you are not alone.
I believe that the Sickle Cell Awareness Foundation Int. is a great organization. It shows the views and struggles of people with this disease in a good manner. It also provides different ways in which people with this disease can get help. Sickle cell is a very hard and frustrating disease to live with. I hope that the research for this disease provides easier ways for people living with this disease to get help.
sickle cell disease is the most common inherited blood disorder in the united states, affecting 70,000 to 80,000 Americans this disease is estimated to occur in 1 in 5,00 African American and 1 in 1,000 to 1,400 Hispanic American. The SCAF have found that there are great ignorance concerning sickle cell disease in general, and treatment amongst the general public and Medical providers. Currently there is no effective cure available for sickle cell disease or trait in the event of a crisis. We focus on distributing awareness and knowledge of sickle cell and the importance of early intervention, prevention efforts, Childcare, Pain management, and urgent treatment.
I have known some people who were born with sickle cell and by volunteering to help out in the walk-a-thon, by giving out water and snacks to our participants, I help others to become more aware of sickle cell disease. My family and I joined on the walk around the park in the sickle cell awareness T-shirt and talked to local joggers about who we are and what we were doing. The sickle cell organization helps to provide scholarships for high school graduates and give out toys to children on Christmas.
This foundation is most important and needed in the community and in all cities to bring awarness to families who may be suffering from this disease. I am a volunteer and Iearned a lot since I have been attending the meetings. I realize that there are many families who are not educated in the facts about sickle cell. Like any other disease, when people do not get the proper care and the correct information, many suffer needlessly. Educating the public is what this foundation does and they are grasping at very opportunity to get the word out to the public. I believe that with continued support and funds, this foundation will reach many who will not have to die from this disease. Hats off to the founders for the unselfish job they are doing.
Paulette Perry
The making of this foundation was one that is considered to be truly worthy for the public. It manages to bring millions of people together from different ethnicities to join in a positive fight to cater for those who have the disease and acknowledge the importance of what sickle cell means. Throughout the previous years since the making of S.C.A.F, I was able to witness smiles on the faces of children and their parents, especially at Christmas time for Toy Drives at churches or even Walk-A-Thons in parks or on the streets on regular days. This made people feel loved and happy to know that even though they may not be of the same family tree, there are people who are concerned about their health and well-being and are willing to help them and support them at the Sicklel Cell Awareness Foundation Inc.
my experience towards this sickle cell awareness, was a brief i have learnt the true meaning of sickle cell, my experience was your signs and a way to cure this disease.
SCAF is doing great work in the community, raising awareness and providing much-needed resources. Ms. Merlene Sotillo and Mr. Molino Sotillo work so diligently to run the organization with love and expertise.
my name is molino .I have two grown kids with sickle cell Disease.I got involved with scaf about four years ago.because of my personnal experience with there up bringing i volunteer with the foundation as the event oganizer to provide comprehensive health sducation,counseling testing services while striving to improve the quality of life for clients and their families.Merlene is doing a wonderful job increasing knowledge to those who may not be informed about the disease.
There is so much to say about the Sickle-Cell Awareness Foundation Inc. and the great work that they have been perfoming community wise. Not only are they working on expanding the community knowledge base about how Sickle-Cell affects, individuals on a daily basis but how to better take care of oneself. As they work on generating support by promoting, walks, blood drives, & bike-a-thons amongst many other things. Through they are working on establishing community support, and generating constructive feedback throught the hospital system to get sicklers the help they need if they have to go to the ER. With all this in sight the founders are not stopping there they are constantly looking for new ways to improve their services both here an abroad...
With so many in our community affected by sickle cell it's great to have a foundation out there to educate. Mrs. Sotillo and her team have done an excellent job in getting the word out there about sickle cell awareness. Through her own personal family experience ,and tireless research from various doctor I have watched this organization grow tremendously within the past three years.
THIS ORGANIZATION IS BEAUITFUL, IT IS HELPING PEOPLE TO KNOW THE REAL CAUSE OF WHAT SICKEL CELL IS ALL ABOUT AND HELPING THOSE WHO HAVE THE DISESE TO COPE,
Merlene Sotillo is an indefatigable President and Chief Executive Oficer of the Sickle Cell Awareness Foundation Int. who strives very hard to keep the organization in the public's eye. She knows first-hand about sickle-cell disease through her education and because she has nursed members of her family through bouts of it. The organization grants scholarships to students and gives Christmas parties to children, and this is done from funds which are obtained from its membership and through fund-raising activities as theater parties. It is visible to the community by the health fairs, 5K runs and blood drives which it conducts. This association is so far-reaching that it holds blood drives in Trinidad and Tobago.