Volunteer Opportunities

For more Information call: (860) 223-7222 or (860) 724-0664 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Sick Cell Annual Walk Coordinator

  • Plan, Organize, and implement a Sickle Cell Walkathon
  • Recruit Volunteers
  • Donations
  • Call other organizations to bring out information - set up booths
  • Find a location
  • Get advertisement - TV, Radio, Computer

Webpage Intern / Coordinator

  • Assist with maintaining and updating the CQSCC Website
  • Post updates regularly with stories of interest to the Sickle Cell community
  • Get Stories (longer pieces) based on interest / need
  • Help with responding to inquires sent to web site

Program Intern / Coordinator

  • Assist with program development including research and writing components
  • Support program preparation involving conference calls
  • Assist with community outreach, recruitment of event co-sponsors, and advertising for community events across Connecticut
  • Call Schools, churches, senior centers etc for details of visiting to offer presentation on Sickle Cell Disease.

Community Health Fair Coordinator

  • Call Health service agencies to ask for their involvement
  • Set up the site
  • Set up date
  • Recruit volunteers
  • Train volunteers
  • Clean up
  • Thank you notes to volunteers & participants
  • Take pictures of events

Newsletter Editor

  • Set up layout of Newsletter
  • Gather information from staff, consumers, other organizations
  • Call printers for pricing
  • Gather critical information about upcoming events, past events, and needs of organization
  • Take pictures
  • Keep a file of newsletters
  • mail newsletters to potential sponsors, donors, and families

Administrative Volunteers

  • Assist with phones, email, call-back to voice mail calllers, clean office; organize files, order supplies when needed

Volunteer Transporation

  • Assist consumers to doctor appointments, support groups, infusion clinic
  • Set up a request line for volunteers to call in their needs for transportation
  • Kepp addresses, phone numbers, emails up to date
  • Call consumers in advance to set up schedule

Computer Tech Volunteer

  • Assist both offices with computer issues, help to maintain computer systems, faxes, scanners and telephone lines
  • Make suggestions and recommendations for updating systems

Board of Directors

  • Serve on the Board of Directors
  • Help to driv the organization mission
  • Fund development
  • Education committee
  • Outreach efforts
  • Oversee functions of the organization

Thank you for your interest in our vision of helping individuals and families living with Sickle Cell Disease!

Citizens for Quality Sickle Cell Care

Board of Directors and Staff

 

What is Sickle Cell

sickle cellSickle Cell Disease is a group of inherited red blood cell disorders. Normal red blood cells are round like doughnuts Healthy Cell, and they move through small blood tubes in the body to deliver oxygen. Sickle red blood cells Sickle Cell become hard, sticky and shaped like sickles used to cut wheat. When these hard and pointed red cells go through the small blood tube, they clog the flow and break apart. This can cause pain, damage and a low blood count, or anemia.

What makes the red cell sickle?

There is a substance in the red cell called hemoglobin that carries oxygen inside the cell. One little change in this substance causes the hemoglobin to form long rods in the red cell when it gives away oxygen. These rigid rods change the red cell into a sickle shape Sickle Cell instead of the round shape Healthy Cell.

How do you get sickle cell disease?

You inherit the altered hemoglobin from your parents, who may be carriers with sickle cell trait or parents with sickle cell disease. You can not catch it. You are born with the sickle cell hemoglobin and it is present for life. If you inherit only one sickle gene, you have sickle cell trait. If you inherit two sickle cell genes you have sickle cell disease.

Is it only in African Americans?

Sickle cell is in many nationalities including African Americans, Arabs, Greeks, Italians, Latin Americans, and those from India. You can be Caucasian and have sickle cell disease or trait. All races should be screened for this hemoglobin at birth.

How can I be tested?

A simple blood test called the hemoglobin electrophoresis can be done by your doctor or local sickle cell non-profit organization. This test will tell if you are a carrier of the sickle cell trait or if you have the disease.

Newborn Screening

Most States now perform the sickle cell test when babies are born. The simple blood test will detect sickle cell disease or sickle cell trait . Other types of traits that may be discovered include:

  • Hemoglobin C trait
  • Hemoglobin E trait
  • Hemoglobin Barts - which indicates an alpha thalassemia trait
  • Beta thalassemia trait
What is Sickle Cell trait?

Sickle cell trait is found in a person who carries one sickle hemoglobin producing gene inherited from their parents and one normal hemoglobin gene. Normal hemoglobin is called type A. Sickle hemoglobin called S. Sickle cell trait is the presence of hemoglobin AS on the hemoglobin electrophoresis. This will NOT cause sickle cell disease. Other hemoglobin traits common in the United States are AC and AE traits.

Why is it important to know?

A person inherits genes that produce hemoglobin from his/her parents. It is important to identify people with a hemoglobin trait so they will be aware of their risk of having children with sickle cell disease.

If one parent has sickle cell trait and the other parent has normal hemoglobin, there is a 50 percent (1 in 2) chance with each pregnancy that the child will be born with sickle cell trait.

sickletrait1

If both parents have sickle cell trait or another hemoglobin trait, there is a 25 percent chance (1 in 4) with each pregnancy that the child will have sickle cell disease.

sickletrait2

Health Guidelines

Get regular checkups from knowledgeable health care providers.

If your baby has a sickle cell disorder, be sure he or she receives the appropriate immunizations at the correct intervals.

babyfeet720

Visit a genetic counselor; counseling and education regarding the trait are important because the sickle gene can be passed to a carrier’s children.

Be sure children with sickle cell disease begin taking penicillin by 3 months of age and continue until at least 5 years of age.

Take multivitamins and folic acid supplements.

Drink plenty of water daily (8-10 glasses).

Avoid over-exertion and stress.

Avoid too hot or too cold temperatures.

While a special diet is not necessary, eat three well-balanced meals each day.

Keep a positive mental attitude