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Support Association Inc.

Increasing the understanding of Neutropenia by providing information and support for caregivers, patients and their families.

National Marrow Failure & Myelodysplasia (MFM) Virtual Patient and Family Conference 2022

2022 MFM Virtual Conference

Saturday April 30th, 2022

 

 Click Links below for further information:

 

2022 MFM Flyer

 

2022 MFM Conference Agenda

 

email sent to us on behalf of Dr. Yigal Dror 

 

Dear friends, 

 

I hope all is well, and you are coping with the unfortunate surge in COVID19 cases. 

Since 2007 we have been organizing a patient and family conference every 2-3 years. As we have done last year, this conference will run virtually. As you know, in these conferences, educational sessions to the patients/families were provided, new scientific knowledge was disseminated, and the challenges and future directions in the field and in the Marrow Failure and Myelodysplasia Program were discussed. The meetings also increases the collaboration between the support groups and the awareness of the patients to the existence of support groups and other services in the country. Last year’s virtual conference saw 150 participants mainly from across Canada and even some from abroad, and the speakers were clinicians, scientists, trainees, patients and family members, nurses, genetic counselors, and transition experts.  

 

The next conference is scheduled for Saturday April 30th, 2022 running from 12:00 PM – 6:00 PM EST. We invite all of you to attend the conference virtually. This coming conference will focus on MDS/leukemia and solid tumors in patients with bone marrow failure syndromes. You can register using the following link https://cvent.me/kkd3Yo.

 

Also, we would like to encourage participation of patients and families from all over the country. If it is okay with you, we have attached the conference flyer and preliminary agenda to circulate to your patients/families with aplastic anemia, MDS and inherited bone marrow failure syndromes. They can use the event website listed on both the flyer and agenda.

 

If you have any questions please let me know. 

I am looking forward to seeing you all at the conference. 

Yigal 

Corona virus

Corona virus disease 2019 (COVID-19) is a respiratory illness that can spread from person to person. The virus is thought to spread mainly between people who are in close contact with one another (within about 6 feet) through respiratory droplets produced when an infected person coughs or sneezes.

The Corona virus, or COVID-19, has been detected in all countries.  Reported illnesses have ranged from mild,to severe, and even death.  The numbers of those who will test positive for the virus will increase but keep in mind that most of the affected will have mild symptoms.

 

For those with Neutropenia, we think it is best that all follow the CDC guidelines as amplified or tailored locally. These steps include:

 

----  Individuals who are on G-CSF should be sure to be vigilant, maintain dosing and not miss doses.

 ----  For those not on G-CSF, when illness occurs, the clinic or ER providing services should be advised that the patient has neutropenia and get a CBC.

 ----  If neutrophil counts are substantially lower than usual, as occurs with some viral infections, i.e., less than 1000, we recommend G-CSF for at least a few days; work with your physician.

 ----  Regarding travel, as far as we know, there is risk is being in crowds with some with respiratory illness, even in the beginning stages. So, airplanes, large social gatherings, etc. are risky and in general should be avoided. 

 

The standard precautions should be done by everyone, including those with Neutropenia

 

---- Wash your hands often.

 ---- If soap and water are not readily available, use a hand sanitizer that contains at least 60% alcohol. Cover all surfaces of your hands and rub them together until they feel dry.

 ---- Avoid touching your eyes, nose, and mouth with unwashed hands.

 ---- Avoid close contact with people who are sick

 ---- Put distance between yourself and other people if COVID-19 is spreading in your community.

 ---- Cover your mouth and nose with a tissue when you cough or sneeze or use the inside of your elbow.

 ---- Throw used tissues in the trash.

 ---- Wear a face mask if you are sick: You should wear a face mask when you are around other people (e.g., sharing a room or vehicle) and before you enter a healthcare provider’s office. If you are not able to wear a face mask (for example, because it causes trouble breathing), then you should do your best to cover your coughs and sneezes, and people who are caring for you should wear a face mask if they enter your room.

 ---- If you are NOT sick: You do not need to wear a face mask unless you are caring for someone who is sick (and they are not able to wear a face mask). Face masks may be in short supply and they should be saved for caregivers.

 ---- Clean and disinfect frequently touched surfaces daily. This includes tables, doorknobs, light switches, counter tops, handles, desks, phones, keyboards, toilets, faucets, and sinks.

 ---- If surfaces are dirty, clean them: Use detergent or soap and water prior to disinfection.

 ---- If you do get sick, seek treatment.

 

While the immediate risk of COVID-19 is  still low at this time, there is still a much more immediate threat of influenza. It's currently flu and respiratory disease season and CDC recommends getting a flu vaccine and taking everyday preventive actions to help stop the spread of germs. If you have not received your yearly flu shot, it’s not too late to get one.

 

This is an emerging, rapidly evolving situation and CDC will continue to provide updated information as it becomes available. For additional and updated information, visit CDC’s Coronavirus 2019 website pages.

 

Stay well.

 

*This information was written and organized by the National Neutropenia Network and the Neutropenia experts with the SCNIR for those who subscribe to the National Neutropenia Network's newsletter. This information is not intended to serve as medical advice. Please see your physician or seek medical treatment is you are ill.