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Kate, NF Mummy Community & Support

30 April 2021

Kate Morgan, 34, was diagnosed with NF1 as a child. She has refused to let her NF1 hold her back and is now a mother of two girls, Esme & Betsi, a primary teacher & has three degrees. She talks about her inspiration to start the NF1 Mummy community group online.

I first had the idea to start the NF Mummy community group after talking with a friend. We were talking about how people assume that because you have a condition, such as Neurofibromatosis, you can’t cope or will have difficulties that prevent you from leading a normal life. She commented how having known me all of my adult life, I in fact, cope far better than people without a condition when it comes to overcoming challenges.

I had previously been considering different ways in which I could spread positive awareness, and after a lot of thought settled on Instagram.

So many parents and caregivers use the platform as a useful tool for parenting information

I wanted to set up a true honest reflection of my life with NF1, and of course having Esme, who also has NF, hoping to support and connect with other like-minded people who may need a helping hand.

Right now, the community is super active. I have followers from all over the world; USA, Australia, India, many have NF1 themselves or have a family member who has it or they are friends of someone with NF. I try to keep a positive approach to everything that I talk about, such as things that have worked in life or when Esme has done something I’m proud of, like a milestone we have reached together. I don’t like comparing children to each other, so I try and make it honest, without boasting or gloating, it’s just talking about a normal family life
with NF1.

Another thing I always share are early education ideas. As a teacher myself and watching Esme grow, I have used many different learning tools:

Some work, some not so much but others may find it useful. I talk a lot about Montessori as a method of education, this is when children are taught through hands-on learning and collaborative play, which I find works well with Esme.

The community has gone from strength to strength during lockdown. So many people have reached out and I have made a lot of new friends.

"I have been fortunate enough to feel as though I always have someone to talk to, which is especially great as I am at home with a baby and a toddler, and my husband works long hours as a farmer. I think going through lockdown has made the community stronger, especially for young mothers."

I myself gave birth to Betsi at the start of the first lockdown and know first-hand its been very different. Without the support of friends and family, no ‘mummy’ dates or park dates, it has been tough to balance nursing a new-born and entertaining a toddler. But we got there, we bonded as a family and Betsi and Esme are incredibly close. Betsi is a chilled out, happy and content baby who is thriving. Walking and chatting and she’s not even 1 yet! It was tough, but thankfully we are safe and well, compared to other people's sacrifices, we had it very easy.

Follow Kate NF1 Mummy on Instagram

@NF1Mummy

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

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Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

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Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

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Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

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Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

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Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

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Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

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Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

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Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

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Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

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Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK