September 9, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 9, 2011

Time: 7-8:00pm

PRESENT

Michael Friend—Harrisburg, PA

Dominique Friend—Harrisburg, PA

Wande Soluade—South NJ/Philadelphia, PA
Verlerie-Portsmith, VA
Simya Enoch-Marlboro, MD

AGENDA

Emergency Room Project

Meeting began at 7:15pm

DISCUSSION SYNOPSIS

Goal is for every patient with sickle cell gets the proper emergency care treatment. MD Logics will assist with restructuring how the emergency rooms work with sickle cell patients. The software is in its early stages however, a contact of MD Logics will join us in a future call. 

MD Logics

**Triage levels ranging in severity and importance

**A 5 level system will be put in place
** Communication with Physicians

CONFERENCE OBJECTIVES

Objectives will change in how we handle these conference calls. We will be provided with more features to help bring better structure to how we handle these conference calls. The new number is 712.432.3100 and the call in # is: 377.527.

CHARGE to CALLERS

*We should have an online movement. There are about 70 Sickle Cell Pages on Facebook. If we were to bring each of those groups together then we can be the most effective in our united goals. We’ve identified those groups but we need to somehow pull together our resources. For instance imagine what would happen if we were able to come together and gain the attention of Oprah?

*Let’s set a date and time and together push a message and see how far we go. Let’s not limit ourselves to Facebook. Use whatever venue will help and take advantage of those groups that your already a part of.

SOON to COME:

*Retreats that are patient oriented which will begin in the next couple of months

*Committee’s will be organized as we get more structured.




CHARGE to CALLERS
***We just need a ray of hope to encourage our community. It starts here and it starts with you saying I want to make a difference.

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

CONTACT:

Send your email addresses & information to sickle1000@yahoo.com

Please visit www.sickle.us for more information on the Faith-Based Awareness Tour

September 8, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 8, 2011

Time: 7-8:00pm

PRESENT

Michael Friend—Harrisburg, PA
Wande Soluade—South NJ/Philadelphia, PA
Diane Creekmore—Norfolk, VA
Simya Enoch-Marlboro, MD




AGENDA
Emergency Room Visits



DISCUSSION SYNOPSIS

Michael once again explained the Faith Based Initiative Tour goals and stressed the need for representatives to come forth for each city. The representative will be the coordinator with their community churches. The target is about 380 cities and the initiative is to come together as one voice on the issues that come up in the sickle cell community. The call today is just a brief run-through of what the tour is. If anyone has specific questions you’re encouraged to send them to www.sickle1000@yahoo.com and they will be answered accordingly.





CONFERENCE OBJECTIVES

*A one day workshop will take place on the topic of Emergency Rooms.
*Training for rep’s will take place for 2 days starting on September 19, 2011.
*We have begun to put together the itinerary for the Retreat which will take place next month and be focused on the patients rather than on the Physicians and Hospital Administration.
*Dr. Allen will be joining us on Friday to delve more into the ER software that MD Logics has been working on. The website for this software will be launching within the next week.
*On the first Friday in November we will be hosting the first meeting for Region 3 which will be geared to assisting every ER in VA. We are hoping for a large turn-out!
During this portion of the meeting Michael encouraged callers to share their personal stories of living with sickle cell.

CHARGE to CALLERS

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

CONTACT:
Send your email addresses & information to sickle1000@yahoo.com
Please visit www.sickle.us for more information on the Faith-Based Awareness Tour

September 7, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 7, 2011

Time: 7-8:00pm

PRESENT

Dominique Friend—Harrisburg, PA

Wande Soluade—South NJ/Philadelphia, PA

Diane Creekmore—Norfolk, VA

Kevin Veal—Cleveland, OH

Keisha Phifer Baltimore, MD

Sereta Chase—MD

Chelby Fhelzy--Birmingham, Alabama

Cheryl Louisme--Orlando, FL

Angel Woods—Congress, GA

---daughter Courtney woods

Glenda Dames--Center Fisher,  Cleveland

Chris Taylor—Gainsville, FL

Devonda Williams—Houston, Texas

d-Etta Jenkins--Clevland, GA

Jenny Wright—California

Brigitte Willkey—Orlando, FL

OPENING PRAYER

Angel Woods

AGENDA

Emergency Room Visits

DISCUSSION SYNOPSIS

Dominique gave a description of the objectives of the Faith Based Initiative Tour & goals from the White-House round-table.

1) Break the silence of the disease

2) Tour going to 380 cities. Tour begins in October. Need representatives!

3) Send an email if you want to be a sickle rep.

4) All advocates come together to work together in order to make an impact.

Send Questions to sickle1000@yahoo.com and any questions will be answered as soon as possible.

Brigitte Willkey—has sickle cell & only recently became aware of sickle cell associations 

Dominique—many people are frustrated and want to help but don’t know how to help. Some organizations have gone as far as they can so we need to go on from there. We need our families to accomplish this! Get them on these calls!

EMERGENCY ROOM PROJECT

A doctor who will join our conference call this week has developed software that will help us with a standard of care in the emergency rooms.  This assures that we are not treated differently no matter where we are located. This software is like a website and you will be able to use it on your smart phone. The doctor inputs your information that way all of your needs are met when you go to the emergency room.

A RETREAT will take place soon called--The Patient Perspective and the ER Project.

CHARGE to CALLERS

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

CONTACT:

Send your email addresses &information to sickle1000@yahoo.com

                       Please visit www.sickle.us for more information on the Faith-Based Awareness Tour

September 5, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 5, 2011

Time: 7-8:00pm

PRESENT

Dominique Friend—Harrisburg, PA

Wande Soluade—South NJ/Philadelphia, PA

Diane Creekmore—Norfolk, VA

AGENDA

Emergency Room Visits

DISCUSSION SYNOPSIS

Discussed was how Emergency Rooms grade pain in sickle cell.  A lot of displeasure was shared in how sickle cell patients are treated.  An example was posed about an area in VA where they refused to treat any sickle cell patients. Patients aren’t given what they need in order to gain relief and not become admitted. If patients are treated promptly and properly then many patients wouldn’t have to need hospitalization.

CONFERENCE OBJECTIVES

*In order to bring about change we need to start at the grassroots and work our way up which takes time.  Dr. Wylus is a physician who has great ideas and he’ll be approached about maybe contributing to the Tour.

*Conference Calls will begin to change & gear towards ER visits.  For instance, there is new software for ER’s to eradicate the complications to sickle cell patients.

*Dominique will reach out to a news broadcaster who suffers from sickle cell to see if we can use his network as a platform to bring about more awareness.

QUESTIONS

**Can Dominique email all of Ms. Diane Creekmore’s contacts as a means of drawing in more supporters?

CHARGE to CALLERS

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

CONTACT:

Send your email addresses &information to sickle1000@yahoo.com

                       Please visit www.sickle.us for more information on the Faith-Based Awareness Tour

September 3, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 3, 2011

Time: 7-8:00pm

PRESENT

Dominique Friend—Harrisburg, PA

Wande Soluade—South NJ/Philadelphia, PA

Diane Creekmore—Norfolk, VA

AGENDA

Emergency Room Visits

CONFERENCE OBJECTIVES

We need to advertise these conference calls more consistently so that the volume of callers doesn’t decrease. It seems as though if this event isn’t reposted on Facebook then people don’t call.

The meeting is cut short due to the lack of volume. The callers that are present will speak to Dominique preceding the meeting to discuss the Faith Based Initiative (FBA) Tour and conference call goals.

*When possible please help by posting these conference calls in your individual groups, profiles or Pages on Facebook. Can each member use the Logo on Facebook to help spread the word? To obtain the Logo please go to Dominique’s profile page.

These Conference calls will remain from Mon-Sat at 7pm.  At times there may be several conference calls taken place at the same time with different objectives/topics. Be prepared for changes when we become more structured.

QUESTION

*How can we reach out to sickle cell patients of the male population?

*Is there a support system for the men in the sickle cell community?

*How can we go beyond the walls of Facebook so we’re not limited?

CHARGE to CALLERS

Let’s not keep preaching to the choir! It seems as though we’re speaking to the same people every time. We need to branch out our friends and families!

*Decide on 3 people that you can reach out and call (friends, church members, family). They don’t have to have sickle cell. Those 3 people you reach out to will then go to 3 people and so on--creating a network of supporters.

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

CONTACT:

Send your email addresses &information to sickle1000@yahoo.com

                       Please visit www.sickle.us for more information on the Faith-Based Awareness Tour

September 2, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 2, 2011

Time: 7-8:00pm

PRESENT

Dominique Friend—Harrisburg, PA

Wande Soluade—South NJ/Philadelphia, PA

Diane Creekmore—Norfolk, VA

AGENDA

Emergency Room Visits

DISCUSSION SYNOPSIS

Discussed was how Emergency Rooms grade pain in sickle cell.  A lot of displeasure was shared in how sickle cell patients are treated.  An example was posed about an area in VA where they refused to treat any sickle cell patients. Patients aren’t given what they need in order to gain relief and not become admitted. If patients are treated promptly and properly then many patients wouldn’t have to need hospitalization.

CONFERENCE OBJECTIVES

*In order to bring about change we need to start at the grassroots and work our way up which takes time.  Dr. Wylus is a physician who has great ideas and he’ll be approached about maybe contributing to the Tour.

*Conference Calls will begin to change & gear towards ER visits.  For instance, there is new software for ER’s to eradicate the complications to sickle cell patients.

*Dominique will reach out to a news broadcaster who suffers from sickle cell to see if we can use his network as a platform to bring about more awareness.

QUESTIONS

**Can Dominique email all of Ms. Diane Creekmore’s contacts as a means of drawing in more supporters?

CHARGE to CALLERS

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

CONTACT:

Send your email addresses &information to sickle1000@yahoo.com

                       Please visit www.sickle.us for more information on the Faith-Based Awareness Tour

September 1, 2011

Faith Based Awareness Tour

Conference Call Minutes for September 1, 2011

Time: 7-8:00pm

PRESENT

Dominique Friend—Harrisburg, PA

Wande Soluade—Philadelphia, PA

Annette Cary—Baltimore, MD

Clinton Squires (reg. nurse)—Tampa, FL

Judy Anderson—Norfolk, VA

Rhonda Peyton—Norfolk, VA

Angela Woods—Conyers, GA

Adrian Kinkaid—Cleveland, Ohio

Keisha Thafer—Baltimore, MD

Theron Matthew—Baltimore, MD

Tina Kay—Birmingham, Alabama

Sherry--Alabama

OPENING PRAYER

*Judy Anderson 7.12pm

DISCUSSION SYNOPSIS

*Dominique Friend begins with reminding everyone that September is Sickle Cell Awareness month and poses the question:  What will be done differently this month? An example of such a difference was referenced to Phyllis Thomas who has organized an all night vigil at a cemetery.

*“One Voice” is what is needed for all of us sickle cell sufferers to come together from state to state to  push sickle cell awareness.  The roundtable discussion at the White House was a way to bring individuals together & from different clergy’s.

*We need to involve our families. Families play an integral role in supporting & pushing this cause forward.  With other illnesses it’s the families that are the key element to making their awareness what it is today.

*A request was sent in to do a White House Reception on Sickle Cell Anemia. We are presently waiting for confirmation from a contact at the White House in order to move forward.

CONFERENCE OBJECTIVES

*Please go to the Book Page on Facebook—Read & “Like” the Page. To find the Page search for Dominique Friend and her various Pages will appear.

*Conference Calls will begin to change & gear towards ER visits.  For instance, there is new software for ER’s to eradicate the complications to sickle cell patients.

QUESTIONS

**Why are there no clinical guidelines for Sickle Cell?

The goal of the tour is to highlight the difficulties the sickle cell community faces and hopefully bring about changes to the system.

**Is the Faith Based Tour virtual or physical?

The tour is a physical tour that identifies one representative from each state/volunteers who choose to work with representatives to spread the message of sickle cell to the various denominations who will in turn help by educating their communities.

**Can we create a letter that everyone can mail on the same day as a way of petitioning key people who can aide in bringing about change?

A letter has already been drafted and will be organized as a plan B in the event that the White House does not give a confirmation for the Sickle Cell Reception.

CHARGE to CALLERS

Let’s get more and more people to join in on these conference calls & this initiative. The goal is for the number of callers to grow each day & week!

IN CLOSING

Tina Kay brought up three topics:

1)      Lifestyles--She talked about how education begins with the child. We should begin education from pediatrics to adulthood.

2)      OB/GYN & umbilical cord blood—Operation Cord Blood

3)      A conference will be held at a resort and any organization or individual can go. More info is provided at her website:  tinakay.net

CLOSING PRAYER & CLOSE OF MEETING

Tina Kay @ 7:57pm

CONTACT:

Send your email addresses &information to sickle1000@yahoo.com

                       Please visit www.sickle.us for more information on the Faith-Based Awareness Tour