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RedHott Project Webinar series: overview
The Sickle Cell Consortium is excited to present the RedHott Project Webinar series as part of Warrior University. The RedHott Project Webinar series was developed to educate individuals on the foundation for important blood transfusion terminology, how to avoid blood transfusion complications, and the critical need for increasing minority blood donations.
This series of Blood Transfusions: What You Need to Know and Do learning sessions delivered via online webinar, has been designed to provide a basic body of knowledge related to Sickle Cell Disease (SCD). Sickle Cell Disease is a chronic condition that causes red blood cells to form a sickle shape. These sickled cells block blood vessels and confine oxygen delivery throughout the body. This can cause people with SCD to suffer from organ failure and chronic pain crises. Blood transfusions are an important therapy for people suffering from the effects of SCD – but repeated transfusions can have harmful risks.
Blood Transfusions: What You Need to Know and Do
The learning series in Blood Transfusions: What You Need to Know and Do are designed with a basic understanding of SCD. These sessions will help attendees learn how to take the hands-on knowledge gained and use it to make rational and informed decisions on whether to receive blood transfusions or decline until another time.
Session 1: Blood Transfusions: How, Why, and When?
February 25, 2019| 6:30 PM EST | REGISTER | Dr. Jim Eckman | RECORDING
- Understand the real risks and benefits of being transfused.
- Understand the important complications of blood transfusion
- Be able to list the medical history that should be tracked with each blood transfusion.
- State why they should keep track of every transfusion: When, Where, Why, and How much?
Session 2: Keeping it Safe: Blood Matching
February 27, 2019| 6:30 PM EST | REGISTER | Dr. Jim Eckman | RECORDING
This session will focus on the participants learning how to keep detailed records of their transfusion history, comprehending the potential hazards and benefits, and how to prevent and treat medical issues related to blood transfusions.
- Describe their role in preventing blood transfusion complications.
- Understand why they need to follow instructions for treating complications.
Session 3: Keeping it Safe: Iron Overload
March 4, 2019| 6:30 PM EST | REGISTER | Dr. Jim Eckman | RECORDING
This session will focus on the participants learning about serious blood transfusion complications and their effect on the body, as well as being able to provide an accurate account of their history with blood transfusions.
- Describe iron overload and alloimmunization as blood transfusion complications.
- State methods to prevent iron overload and alloimmunization.
Session 4: African-American Blood Donations: Why are they important?
March 6, 2019 | 6:30 PM EST | REGISTER | Ashley Singleton | RECORDING COMING SOON
This session will focus on the participants learning the significance of minority blood donations and how to access education on effective procedures to increase minorities to donate blood.
- Explain the importance of minority blood donations.
- Access best practices to increase minority blood donations.
Session 5: Let’s Talk: Patient-Provider Communication
March 11, 2019| 6:30 PM EST | REGISTER | Dr. Raymona Lawrence | RECORDING
This session will focus on the participants learning to discern and advocate their needs when it comes to conveying to medical staff regarding transfusion requirements.
- Differentiate when a transfusion is necessary and when it is not necessary.
- Effectively communicate with medical providers about blood transfusion related needs.
Class 1 – Why get involved with FDA?
- Regular and sustained patient advocacy with the FDA is important because:
- Helps FDA understand the impact of sickle cell
- Used in the approval decisions to balance the benefits and risks of new therapies
- FDA wants and solicits patient input into their processes.
Class 2 – Building an advocacy resume
- What is an advocacy resume
- Why is it important to have an advocacy resume
- How do I build an effective advocacy resume
Class 3 – How to get involved with FDA?
- There are many ways the FDA solicits input from patients including product specific and context setting opportunities.
- Key ways to get involved include: acting as a patient representative, participating in listening sessions and focus group sessions.
- Helpful tips make it easier to take next steps and engage with the FDA.
This 2-Day in-person training series will be held immediately after the 4th Annual Leadership Summit at the DoubleTree by Hilton – Buckhead/Atlanta. March 17 & 18, 2019
We are pleased to announce Dr. Chic Smith, Asst. Dean at U.Va., (private/philanthropic grants), and Funmi Makinde, from the Office of Minority Health Resource Center, (government grants), will facilitate a Special 2-Day Grant Training series of Warrior University on March 17 and 18, immediately following the Leadership Summit.
Participants are invited to submit a draft Letter of Intent/Letter of Inquiry to be reviewed during a MOCK review session by Consortium reviewers. We will use the Eugene Washington PCORI Engagement Award for this purpose. To participate, visit the Eugene Engagement Award guidelines to familiarize yourself with the details of this program. Submit your mock LOI to Dominique Goodson at email@example.com no later than Friday, March 8 at 4:59 pm EST. Your LOI will be reviewed by individuals experienced in LOI and grant review. Although these will not be the same individuals who review for PCORI, we encourage you to take this process very seriously. PCORI is accepting actual LOIs for this award (due May 31, 2019). Participating in the training DOES NOT guarantee that you will be awarded a grant by PCORI or any other granting organization. This training has been created to help partners become familiar with grant writing and to prepare to submit for grants in the future.
Session 1: Introduction to Private Foundation/Philanthropic Grant Writing
Dr. Chic Smith | March 18 | Leadership Summit
- Locating Private/Philanthropic Grant Resources
- Identifying partnerships
- Grant cycles
Session 2: The VDC (Vision, Design, Capacity) Workshop – Improving the Skills of Technical Writers
Funmi Makinde, MPH, CHES | Elton Naswood | March 19 | Leadership Summit
The VDC (Vision, Design and Capacity) Workshops have been conducted in a variety of communities across the United States since 2002. The workshops have improved the writing skills of participants and increased their understanding of the components and usual requirements of completing successful grant applications. The trainings were initially offered to community-based organizations and have since expanded to address research funding at institutions of higher education in the United States.
- Participants are sequentially engaged through lectures and interactive exercises, over 2 days.
- Review principles of technical writing, practice strategies to relay information in grant applications
- Share the tips and standards Grant Reviewers use as they screen applications going to the Funder.
Session 3: Navigating Online Grant Portals
Dr. Lakiea Bailey | March 19 | Leadership Summit
- A review of online pharmaceutical grant portals
- Step by step review of submitting funding proposals via online portalsCreating successful RFFs (Request for Funds)
A discussion on Gene Editing, vectors, and a breakdown and explanation of the HIV comment from the 60 Minutes interview on sickle cell disease.
This class is part one of a continuing webinar series (coming Fall 2019) on Gene Editing and Gene Therapy. Class one with Dr. Julie Kanter focuses on gene editing, vectors, and an explanation of the HIV comment made during the 60 Minutes interview on sickle cell disease.