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Children’s Tumor Foundation – Coronavirus Update – August 24, 2021
Neurofibromatosis and the COVID-19 Vaccine
Many individuals with NF have concerns about whether their NF diagnosis places them at additional risk of side effects from the COVID-19 vaccine. Fortunately, we have no evidence of specific safety concerns related to the COVID-19 vaccine in people with NF, including no increased risk of benign or malignant tumor growth, pain, or other symptoms. Individuals who are on treatments that can suppress the immune system, such as chemotherapy, should discuss the safety and efficacy of vaccination with their health care provider, as should individuals with an adverse reaction to previous vaccinations.
In addition, some people are concerned about whether the Pfizer and Moderna vaccines, both of which are mRNA-based vaccines, can interact with the NF genes or their mRNA transcripts. Messenger RNA (mRNA) is the RNA copy of a specific gene that is the code used to make a protein. In the case of NF1, the protein is neurofibromin; for NF2 it is called merlin; and for the vaccine, it is a protein that is unique to the virus. It is important to understand that these mRNAs have nothing to do with one another and do not interact with one another. Hence, there is no danger that the COVID-19 vaccine mRNA will have any adverse effect on the function of the NF mRNA or the NF genes. The vaccines also do not modify the DNA in any way, and therefore do not pose any specific safety risks to persons with any form of NF.
-Written by Bruce Korf, MD, PhD from the University of Alabama Birmingham and fully supported by the Children’s Tumor Foundation Clinical Care Advisory Board.
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Children’s Tumor Foundation – Coronavirus Update – April 8, 2021
2021 Virtual NF Conference
June 14 – 16, 2021
To view agenda and speakers and to register, visit ctf.org/nfconference.
Abstract Submission Deadline: April 23, 2021 11:59EST
Save-the-Dates:
2022: June 18–21, Loews Hotel, Philadelphia, Pennsylvania
2023: June 24-27, Fairmont Princess, Scottsdale, Arizona
Questions? Contact Patrice Pancza at ppancza@ctf.org or 212-344-7291.
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Children’s Tumor Foundation – Coronavirus Update – April 7, 2021
AstraZeneca Wants you to “Be Prepared and Make a Plan”
The COVID-19 pandemic has profoundly impacted healthcare, and neurofibromatosis (NF) is no exception. Families with a loved one who has NF may be postponing or facing delays in care which may result in additional complications down the road. Click here for more information and tips to help get NF care back on track.
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Children’s Tumor Foundation – Covid-19 Vaccine Update – January 13, 2021
Covid-19 has impacted us both as a community and as individuals. It is natural to be concerned about how COVID-19 might pose particular risks to someone living with neurofibromatosis in any form, and we at CTF want you to know that we are listening to those concerns.
Vaccine news has been promising, and there are no specific data that any of the Covid-19 vaccines affect people with NF differently than other people. CTF recommends speaking with your medical professional about your particular condition and options and consulting the CDC guidelines.
Every individual and family is faced with making decisions about work, school, and social or religious gatherings based on your own or your family’s needs. At this time, there are no data to suggest that having any form of NF increases your risk of contracting COVID, nor are there data to suggest that individuals living with NF are at increased risk of more severe illness as a result of contracting COVID-19. Experts agree that this is good news, however the picture is still not complete as we simply do not have enough information to know with certainty that COVID-19 does not pose a more serious risk to the NF community.
Each individual living with NF in any of its forms should speak with their NF doctor about risks specific to them. For example, individuals with neurofibromatosis type 1 (NF1) are at an increased risk for hypertension (high blood pressure), cerebrovascular disease (stroke), malignant peripheral nerve sheath tumors (MPNSTs), and serious heart conditions such as cardiomyopathy (weakened heart muscle). Patients with any form of NF may have tumors in the neck or chest or severe scoliosis (curvature of the spine) that impair breathing. According to the CDC, such medical conditions may place people at an increased risk of severe illness from COVID-19. If you or your child has a serious medical complication related to NF, it is important to minimize possible exposure and follow safety guidelines. The CDC provides additional recommendations for those living with underlying medical conditions which you can review here.
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Children’s Tumor Foundation – Coronavirus Update – April 30, 2020
2020 NF Conference Now Virtual
June 15 – 16
Registration and Detailed Agenda to be announced soon
SUBMIT YOUR LATE BREAKING RESEARCH!
DEADLINE EXTENDED TO MAY 11
Save-the-Dates
2021 – June 12th – 15th Fairmont Princess, Scottsdale, Arizona
2022 – June 18th – 21st Loews Hotel, Philadelphia, Pennsylvania*
*We wish to thank our friends at the Loews Hotel in Philadelphia for working closely with us and allowing us to postpone our stay with them to 2022.
Questions? Contact Patrice Pancza at ppancza@ctf.org or 212-344-7291.
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Children’s Tumor Foundation – Coronavirus Update – April 14, 2020
NF Conference Canceled ** Virtual Meeting Planned ** Abstract Submission Deadline Extended
In light of the global public health crisis related to the COVID-19 pandemic and, most importantly, in the interest of the health and safety of the entire NF community, the Children’s Tumor Foundation, its Board of Directors and the 2020 NF Conference planning committee have made the collective decision to cancel the 2020 NF Conference to have taken place at the Loews Hotel in Philadelphia from June 13-16th.
While an in-person meeting is not possible at this time, there is still vital and timely information to share with the community. Therefore, we are currently exploring the most effective ways of hosting a scaled-down meeting in virtual format. We will provide updates with details of this reformatted event as they are developed. As of now, we expect this to take place within the originally scheduled June 13-16th timeframe.
The virtual program will include both platform and poster sessions. We are therefore extending the abstract submission deadline to May 4th to accommodate those who could not meet the original deadline due to COVID-19-related schedule disruptions, and for those who have late-breaking research data to share.
Anyone who has registered and paid for the conference will have their payments automatically refunded.
Questions? Contact Patrice Pancza at ppancza@ctf.org or 212-344-7291.
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Children’s Tumor Foundation – Coronavirus Update – March 24, 2020
In the midst of COVID-19 outbreak, the NF Community came together for a live global video chat on Friday, March 20, 2020. After an introduction and reflection from from CTF President Annette Bakker, PhD, NF experts Bruce Korf, MD, PhD, and Scott Plotkin, MD, PhD, answered questions about the coronavirus and its impact on patients with neurofibromatosis, and educational experts from within the community offered tips and resources to parents of children with NF who are home from school. Click below to view the meeting. (*Closed-captioning available.)
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Children’s Tumor Foundation – Coronavirus Update – March 18, 2020
Dear friends,
This is an extraordinarily challenging time. The coronavirus outbreak has meant changes in the way we live and in the way we interact. As always, we are committed to protecting the health and well-being of all, particularly the most vulnerable among us. But even as we are at the moment both physically and socially distanced, as members of the NF community we are always connected by our drive and desire to see an end to NF.
The NF community is strong, and I am inspired by the way our community has come together during this time – people checking in on each other, everyone sharing information to protect one another, and all continuing to be brave and fearless. It’s quite amazing, but also not surprising.
The health of our NF patients and families during this time is most important, and I want nothing more for all of you than to remain safe.
As we continue to monitor developments of the coronavirus and its impact both socially and financially, I’d like to address a few questions for you that I hope will help lessen some of the uncertainty.
I’m an NF patient (or I care for one). Is there something special I should be doing to protect myself?
As we all know, NF is unpredictable and variable. The NF experts have told us that the best thing an NF patient can do right now is to follow the guidelines of the Centers for Disease Control and Prevention. Visit here for the best and latest guidelines on how to protect oneself, and what to do if you think you are affected. Please also check in with your medical professional if your particular case needs extra attention, or if you have questions regarding scheduled care or procedures. And please follow the CDC guidelines regarding washing hands, social distancing, and more. Again, visit that website here.
We’re also pleased to announce that this Friday, at 1PM Eastern, we will be hosting a Global Live Video Chat of the NF Community. On the chat will be two leading NF experts: Bruce Korf, MD, PhD, of the University of Alabama at Birmingham and Chair of the CTF Medical Advisory Committee, and Scott Plotkin, MD, PhD, of Harvard Medical School and Massachusetts General Hospital, and Chair of the CTF Clinical Care Advisory Board. While this online get-together is informal (no presentations) and personal medical advice cannot be given, both Dr. Korf and Dr. Plotkin will be available on the call to take general questions from the NF community about the potential impact for NF patients.
Staying at home or away from school is going to be really tough. Is there anyone I can talk to?
One of the things we hear often from NF patients (and their families/caregivers) is that living with NF often means social distancing of a different sort. And while the use of social media can help (visit CTF’s Facebook, Twitter, LinkedIn, and Instagram pages), we know that’s not for everyone. As mentioned above, please join us and the NF community on Friday at 1PM for an informal chat and a coming together. It’s a chance for anyone who wants to get together, to do so. That sign-up link again here. And the good news is, if you really like it, we can have more of these chats together. We are here to support you and your loved ones!
And if you ever want to reach the Foundation about anything, please do not hesitate to call us at 1-800-323-7938 or 212-344-6633. Or email us at info@ctf.org.
What about Children’s Tumor Foundation events? Will they take place?
In the immediate term, all March and April meetings/calls are being hosted virtually over video conference. For in-person CTF events in March, April, and May, we are following the CDC guidelines regarding gatherings of 50 people or more. To ensure the health and safety of the entire community, we are implementing the following measures:
- Shine a Light NF Walks and CTF Special Events: All CTF sponsored Walks, Kickoffs and Special Events scheduled in March, April and May are being postponed. CTF staff are working closely with volunteer organizers to reschedule these events and will announce new dates when they become available.
- NF Endurance Events: NF Endurance staff are in communication with race hosts/partners, and will communicate directly with impacted event participants. Whether a race is canceled or not, fundraising pages will remain open until the end of the year.
- Classrooms that Care: These school-run fundraising programs are contingent upon schools being open. Widespread school closings are affecting schedules, and CTF staff are working with teachers and organizers regarding possible reschedules to the fall.
- NF Camp: At the moment no plans have been made to cancel this year’s sessions in July. We will communicate further if anything changes.
For the moment all other summer and fall events remain unchanged, but we will continue to monitor and will communicate any changes.
The NF Scientific Conference in June is under review and while the intention is to hold the meeting, we are consulting experts globally and will communicate any changes soon.
What about CTF staff? How are they impacted?
We’ve taken the guidance of New York State and New York City and have closed the CTF NYC office for two weeks, with an anticipated reopening on March 30. While that date may change, all CTF staff, whether in NYC or around the country, are working remotely. We expect that our ability to conduct CTF business during this time will continue. We do ask for your patience if meeting formats or times need to be modified. Please also note that there may be a delay in the mail and donation processing for letters/items physically received at the NYC address. Online and telephone donations and communications will remain unaffected. You can always reach the Foundation staff directly here. Or call the main line at 1-800-323-7938 or 212-344-6633. Or email us at info@ctf.org.
Amidst all the news, some hope.
Even as we work through this challenging moment together, the innovative research taking place to end NF continues. The coming weeks may see workarounds for meetings, and perhaps even some postponements. But you have our commitment that our dedication to finding treatments for NF will never be postponed. As of this writing, the drug selumetinib is under consideration at the FDA, and we are very hopeful that this may be the first drug ever approved for a form of NF. This drives our inspiration that where there is one answer, there are many more. And this means that we won’t stop until we have defeated all manifestations of NF.
My friends, in the coming days and weeks, please be safe and take care of each other (and yourselves). We’ll keep reaching out as we know more. Feel free to reach out to us. Please visit cdc.gov to stay up to date on the latest coronavirus news, and visit ctf.org for NF community news.
Annette Bakker
President, Children’s Tumor Foundation
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Children’s Tumor Foundation – Coronavirus Update – March 12, 2020
We continue to closely monitor the coronavirus (COVID-19) situation and are prioritizing the health and safety of the entire NF community – patients, caregivers, researchers, event attendees and staff. As reported earlier (previous update below), we are reviewing CTF events on a case-by-case basis and are communicating any changes or cancelations to attendees as relevant. We encourage all to follow the Centers for Disease Control and Prevention guidelines (cdc.gov) and to check with their medical professional as warranted.
Upon consultation and review of guidelines issued by New York City and New York State recommending that all should work from home when possible, we have taken this guidance and will be closing the NYC office starting Monday, March 16, with an anticipated reopening in two weeks on Monday, March 30. All Children’s Tumor Foundation business will however continue unaffected during this time, as all CTF staff – both in NYC and around the country – are equipped with the technology to work remotely. Please note that there may however be a delay in the mail and donation processing for letters/items physically received at the NYC address. Online and telefonic donations and communications will remain unaffected.
Should you have any questions, please contact the Foundation by emailing: info@ctf.org or calling either 1-800-323-7398 or 212-344-6633.
Staff contact information can also be found here: https://www.ctf.org/who-we-are/staff
Thank you to all who have reached out and checked in with members of the NF community. While the coronavirus outbreak remains a serious issue, we are also encouraged by the spirit of collaboration of people coming together to protect the vulnerable among our friends and neighbors. It’s the same spirit we recognize throughout the NF community in its mission and passion to end NF. That mission remains unchanged. For the moment, our additional passion is to also make sure to protect all who may be vulnerable to coronavirus, as we are all together equal members of the global community, with or without NF.
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March 10, 2020
Dear Members of the NF Community,
As an organization fully dedicated to the health and well-being of the NF community, we all have a particular interest in the increasing news surrounding the coronavirus (COVID-19) outbreak that has now reached the United States and potentially impacts our community. Many NF patients and families have already started to take precautions to protect themselves by working from home when possible and avoiding potential risk factors (for example, non-essential travel).
We continue to monitor these developments and our advice to everyone – NF patients, families, and indeed all Americans – is to follow the recommended safety measures of the U.S. Centers for Disease Control and Prevention (CDC). Up-to-date guidelines can be found at www.cdc.gov. If you are an NF patient or caregiver, we additionally advise you to consult with your medical professional for issues specific to your care.
As event season is now also beginning for the Foundation, we have reviewed upcoming CTF events and for the time being, our assessment is the following:
NF Scientific Conference (June 13-16 in Philadelphia): As of today, we intend to hold this meeting as scheduled, but continue to monitor the situation. The Conference brings in experts from all around the globe, and with coronavirus knowing no boundaries, we will further assess/review options in the coming weeks as more is known about the disease’s impact globally and within the U.S.
NF Patient Events (NF Forum and the Volunteer Leadership Council meeting, all taking place later this summer and in the fall): These events remain unchanged for the moment.
Other CTF Events (NF Walks, NF Endurance, Special Events, Classrooms That Care, etc.): These are being reviewed on a one-by-one basis, but there are currently no changes. This may evolve as more becomes known.
Please also note the following regarding CTF staff and volunteer travel: our commitment to staff and volunteer health and well-being is of course of high priority, and we are advising CTF staff and volunteers to make travel decisions at their best discretion. What this may mean is that in the short term and in higher-risk situations you may find staff/volunteers calling in for meetings and events, rather than traveling. Should this occur, it will be communicated in advance and workarounds will be made to the best of our ability. Therefore, we expect that CTF business and obligations will be fulfilled, but we ask for your patience should an event format need to be revised.
Thank you for your patience and understanding as we work through this moment, and of course thank you as always for your continued support of the Children’s Tumor Foundation.
Annette Bakker, PhD
President
Children’s Tumor Foundation
Bruce Korf, MD, PhD
Chair
CTF Medical Advisory Board
