WHAT IS SICKLE CELL?
Sickle Cell Disease is a genetically inherited blood disorder prevalent among people of African, Caribbean, Central/South American, East Indian, Middle Eastern, Mediterranean, Asian and Southeast Asian ancestry.
>>>read more
There are more than 400 unusual hemoglobin genes associated with sickle cell disease and other hemoglobin variants
>>>read more
WEB RESOURCE

MAYO CLINIC: Sickle cell anemia is an inherited form of anemia — a condition in which there aren't enough healthy red blood cells to carry oxygen throughout your body
>>>read more

WebMD: Combating Sickle Cell Video

WebMD: Sickle Cell Research Video

SOCIAL NETWORKS
SCTPN Facebook Group SCTPN on My9News
SCTPN WALK FAQ
  1. Who is Kintera?

  2. How do I register for the SCTPN Annual 10K Walk-for-Education & Awareness online?

  3. What is unique about this website?

  4. Is my information secure?

  5. What is the long website address for that I received in my confirmation receipt?

  6. Can friends and family make a donation to a Walker by going through the main website?

  7. Is a portion of the registration fee a donation?

  8. How does Sickle Cell Thalassemia Patients Network utilize the contributions?

  9. Why is the "Sponsor Walker " search not finding the Walker that I know has registered?

  10. How can I see who has donated to me?

  11. I forgot my Username and Password. How can I find out what they are?

  12. All of my Donors are not showing up on the scroll mechanism. Why?

  13. Will Kintera put my name on various mailing lists?

  14. Where/when does the SCTPN WALK take place?

  15. How long is the SCTPN WALK?

  16. Should walkers use their home or work address to register?

  17. Is there a minimum amount I should raise for the WALK?

  18. Where does the money go?

  19. To whom should donation checks be made out to?

  20. Where do I mail donations?

  21. What should I do to start raising funds for SCTPN WALK?

  22. What are matching gift programs?

  23. Who qualifies for incentives?

  24. What is a team?

  25. What are a team leader's responsibilities?

  26. How do I get an updated team list?

  27. How can I promote the SCTPN WALK to potential team members?

  28. If someone registered for the SCTPN WALK as an individual, can they still Join a Team?

  1. How else can I support the SCTPN WALK?



WEBSITE INFO
Who is Kintera?
Kintera is a marketing infrastructure service provider offering advanced Internet fundraising solutions to charitable, educational and political organizations. Sickle Cell Thalassemia Patients Network has contracted with us to provide online support for the SCTPN Annual 10K Walk-for-Education & Awareness. Through the website you can register for the event, collect donations from family and friends and more.

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How do I register for the SCTPN Annual 10K Walk-for-Education & Awareness online?
Go to the register here button and complete the form. You will be guided through the registration process. Once your transaction is complete, you will receive a confirmation email receipt.

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What is unique about this website?
This website is so unique because it offers the capability for individuals to not only register for the event, but also to collect donations from their friends and family through a much more efficient mechanism. Sickle Cell Thalassemia Patients Network Event Manager and the event Walker can track the progress of donation collections through viewing secured online reports.

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Is my information secure?
Yes. Kintera has made every effort to protect your information. We use industry-standard SSL encryption techniques to make sure that your credit card information, passwords, and personal information travel securely over the Internet. We have also installed an encryption engine on our database server so that your data is securely stored.

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What is the long website address for that I received in my confirmation receipt?
This website address will take you to your personal donation page. This address link is automatically included in any emails that are sent through the email center in event headquarters after you have logged into the website. You can also copy and paste this link into any other form of email.

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Can friends and family make a donation to a Walker by going through the main website?
Yes. On the home page of the website, friends and family can locate a Walker by clicking on the "Sponsor Walker" button. By typing in the name of the Walker, they will be directed to the Walker's personalized pledge page.

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Is a portion of the registration fee a donation?
No. Your registration fee and donation are two separate amounts. However, you can deduct both on your tax return.

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How does Sickle Cell Thalassemia Patients Network utilize the contributions?
To get more information on how Sickle Cell Thalassemia Patients Network uses contributions, please email info@sctpn.org. You can also visit our main website at http://sctpnwalk.org or call us at (347) 533-8485 for more information.

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Why is the "Sponsor Walker" search not finding a Walker that I know has registered?
You must type in the first name or last name of the Walker exactly how it is spelled. It is not case sensitive. If you have a problem locating a Walker that you are sure has registered, please contact us by visiting our customer support site and we will contact you to help.

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How can I see who has donated to me?
Go to the Log-in section on the site. Use the Username and Password that you received when you registered for the event. You can then view your Donor list and the amounts that have been donated.

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I forgot my Username and Password. How can I find out what they are?
Remember that your username and password are case sensitive. Click here to find your password. You will receive an email with your username and password. If you still have problems, please contact us by visiting our customer support site.

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All of my Donors are not showing up on the scroll mechanism. Why?
As your Donors make a contribution, they have the option of whether or not they want to appear in the recognition scroll.

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Will Kintera put my name on various mailing lists?
Kintera, Inc. collects and maintains only personal information that is voluntarily submitted to us. We will only share personally identifiable information with a third party if and when the individual submitting this information has permitted us to do so, or if we are required by law to do so. For more information, please read our Privacy Policy. Sickle Cell Thalassemia Patients Network will also maintain a copy of your information.

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Where/when does the SCTPN WALK take place?
SCTPN’s WALK will take place on Saturday, September 24, 2011. Registration will begin at 9am and the Walk will begin at 11am. The WALK will take place at two convenient locations; Central Mineral Springs (NYC) and Cow Meadow Park (Freeport, LI).

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How long is the SCTPN WALK?
It is 10 kilometers (6.2 miles) and takes roughly 2-3 hours to complete.

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Should walkers use their home or work address to register?
All walkers should register using their home address. If you must use your office address, make sure you put your company name as often times the post office will return mail sent to an individual at a business address. Providing more than one address will result in a duplicate registration.

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Is there a minimum amount I should raise for the WALK?
SCTPN does not require walkers to raise a minimum amount of money. However, we encourage everyone to set a fundraising goal and do their best to achieve it.

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Where does the money go?
While helping families is the top priority of SCTPN, funds will be used to increase public awareness of sickle cell disease and other hemoglobin disorders. A portion of the funds raised is used to support its undergraduate scholarship and the Lori N. Fleming Belanger Graduate Scholarship Fund.

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To whom should donation checks be made out to?
Please make checks payable to SCTPN WALK.

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Where do I mail donations?
SCTPN WALK, 1139 St. John’s Place, Brooklyn, NY 11203 *Please clearly include the name of whom you are sponsoring on the check or on a separate piece of paper, otherwise your donation could be credited as a general donation.

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What should I do to start raising funds for SCTPN WALK?
A few simple suggestions to get started with your fundraising can be found below. For more fundraising ideas contact the SCTPN WALK office. Set up Your Team or Individual Fundraising Web Page. Then send out an e-mail to friends, family members, and coworkers. Each e-mail sent from your web page contains a link to sponsor you online with a credit card.

Recruit 10 Team Members and suggest that each of them ask 10 people to donate $25 each. This will result in each Team Member raising $250 (they will qualify for gift) and your Team raising $2,500+
Matching Gift Programs. Many corporate organizations have corporate giving programs that match the contributions their employees give to a charitable organization. By utilizing the matching gift programs of your employer or your family and friends' employers, you can quickly double or triple your fundraising dollars.

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What are matching gift programs?
Matching Gift Programs are established by many companies with the intention of supporting nonprofit organizations by "matching" contributions made by their employees. Ask your human resources representative about your employer's corporate giving policies and whether they have a matching gift program.

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Who qualifies for incentives?
Individuals, team members, and team leaders qualify for incentives based on funds personally raised. Additionally, team leaders whose team raises $1,500 or more, will qualify for the congratulatory event incentive.

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What is a team?
Teams are comprised of Walkers representing a variety of companies, schools, churches, or organizations. There are also many friends and family teams that participate, some of whom walk in memory of those they have lost. Teams can range in size from two to more than 1,000 Walkers.

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What are a team leader’s responsibilities?
A team leader's role is to recruit, inspire, and motivate people to register as well as raise funds. In order to promote team participation, a team leader's first task is to distribute materials to all potential Walkers as quickly as possible. After Walkers begin to register, following up is the key to fundraising success. Team leaders should allow their team member to collect and submit their funds individually. .

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How do I get an updated team list?
Team rosters are always available on your team web page. Click on your team name to view your team's web page and see the list of people currently registered on your team. Simply visit http://SCTPNWALK.kintera.org. Click on "registered participants" to log in and view the participants on your team. You may also contact your team coordinator to request a team roster.

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How can I promote SCTPN WALK to potential team members?
We suggest doing one or all of the following: Set up your team web page and send out an e-mail to recruit team members. Remember, anyone can join your team. Ask family, friends, or invite vendors, clients, and customers to raise money and WALK with your team.

Form an SCTPN WALK committee. Encourage some coworkers to become co-leaders. Ask senior management to write an appeal to all employees urging them to register.

Hold an SCTPN awareness day with a kick-off luncheon or brunch. Sign up team members at a registration table. An SCTPN WALK representative can attend your event and help make it a success!

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If someone registered for the SCTPN WALK as an individual, can they still Join a Team?
Pre-registered walkers can still be part of your team. Simply call the SCTPN WALK office or email us at sctpnwalkchairs@gmail.com  with the walker's name, address, phone number, and e-mail address (if available) and ask to have them transferred..

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How else can I support SCTPN WALK?
How else can I support SCTPN WALK? There are many opportunities for your team to get involved in the SCTPN WALK, from becoming a sponsor, to making an in kind donation, to volunteering. If you would like to find out more about any or all of these options, please contact the SCTPN WALK office at (347) 533-8485 or email us at info@sctpn.org.

 

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SCTPN, a 501 (c)(3) tax-exempt organization, provides education, advocacy, referral services, and support for individuals
and families living with sickle cell disease (SCD), thalassemia (Cooley’s Anemia), and other inherited blood disorders.