I am devastated. I have just discovered Hilary passed away in July. I had been trying to contact her recently for updates, known her 20 years. Hilary did not take life lightly and was an amazing advocate for people with Post-polio and the impact on their lives. There are not many like her. I will miss her integrity, sense of fairness and justice. My heart goes out to her friends, family and Richard.

I found the Polio Survivors Network while living in Kent and trying to get a diagnosis for my failing strength and ability to walk. I first met Hilary at one of the Annual General Meetings in Lincoln. One of our daughters lives in Nottingham and we also visited Hilary and Richard in their bungalow. When we moved to Nottingham I offered my services and for a short time, I was secretary. Later I became a trustee and Hilary encouraged me to attend the Annual General Meeting of the European Polio Union held in Budapest where I was born and where I caught polio. I will miss her contributions to the monthly newsletter, and find it difficult to imagine how we can carry on without her. May she rest in peace with her beloved Richard.

I was lucky to get to know Hilary a little whilst completing a 10 day "Sharing Knowledge" course in Lincoln back in 2011/12. It was a leadership programme all about achieving policy and systems change. Hilary was a fabulous course member, always generous with sharing her views. Hilary brought attention to areas where she felt things could be improved, but my main memory is of her being great fun, with a fabulous approach to working as a team. Hilary's openness about her own experiences, her care towards others and her determination to improve the status quo will be remembered fondly. Condolences to Hilary's family and friends at this difficult time.

I first met Hilary late 1990’s when my sister in law took me to her home to meet her. Hils had a passion for trying to educate professionals about the symptoms of post polio. Some were interested, some not, and lack of neurologists in the N.H.S around the country to help P.P.S, was very limited. Hils very quickly highlighted the absence of same. She fought and won many times the medical profession from their lack of knowledge and understanding. Hils was forthright, determined and great diligence (careful and persistent in work of effort and refused to be put down) She was kind, thoughtful and caring towards people in distress asking for help and information. At times she was overwhelmed by it all, quickly realising a time slot of after 7pm a good time to phone her when she had fed and settled Richard’s evening meal and sitting comfortably in her armchair in the lounge. Hils gathered much information by travelling to other Countries where she met her lovely Richard and married him. A marriage made in heaven! as they both struggled with their illnesses together, and laughed and cried together in equal measures of good and bad times. Hils deserved to receive an MBE and go to meet the Queen wearing her new hat!😀 for all her achievements in helping people far wide. (M.B.E, is an award that is given to people who have worked hard for their community over a long time and made a difference. They have shown other people what can be done through hard work.) No house/home would ever of been big enough for Hils as she filled her place with papers of worldwide knowledge of PPS and forgot her own message in PSN of pacing and resting and collapsing. Her work load was huge, whoever could fill your shoes Hils to carry on the work you started in the 1990’s. I came across an email from Hils a long while back, she had links with Cornwall and Devon, and l had been describing something in Devon, the latter Hils saying she remembered it well sitting on the wall of the Shell garage betwixt Exmouth and Budleigh Salterton collecting car numbers with her brother. The yearly AGM’s were something to look forward to not forgetting how much hard work to prepare for, and daughter Ali preparing lovely buffets for us, but after we had left the Ibis Hotel and gone across to the (can’t remember its name) to eat, we would all return to the Ibis lounge area and Hils regaling stories of her time in the police force having us in fits of laughter, added to by Richard’s dry sense of humour, and not wanting the evening to end. Will miss you both so much and thanks for being on the end of the phone for a laugh and to put the world to rights (and social services😂) Rest in peace Hils, the world will not be the same without you, you were an extraordinary character and will be sadly missed, there is definitely not two of you in this world. Much love,

I was saddened today to learn that Hilary has passed away. She will be greatly missed by many who did not have the opportunity to meet her personally, but her determination to improve life for herself and others was remarkable. I personally benefitted from this, as I know many others must have done too. Please pass my condolences to all the other volunteers of the Polio Survivors Network

I am very sad to hear that Hilary has passed away. In the 1990s I came across Hilary who spoke about polio at a meeting in Lincoln. Until that meeting polio was not really spoken about and due to the vaccine being so successful over the years doctors seemed to have forgotten about polio. Hilary was a lovely woman, so knowledgeable and passionate about not letting the medical profession dismiss polio as a trivial nuisance. Thanks to people like Hilary a rare voice in the darkness, Post Polio Syndrome was acknowledged as existing and not in our imagination. A remarkable lady I shall truly miss her.

We send condolences to family and friends at this difficult time.

We send condolences to family and friends at this difficult time -

I was deeply saddened to learn about the death of Hilary, the founding member of the Post Polio Survivors Network. Her dedication, knowledge, and contributions have made a lasting impact on the lives of many and her legacy will be remembered with great respect and gratitude. I have met Hilary on many occasions and found her sense of humour and perseverance infectious. She is greatly missed. I send my sincere condolences to Alison and Michael hoping that you will find consolation in the cherished memories you shared and in the knowledge that Hilary's work has made a profound difference in the lives of so many.

Very shocked at the news about Hilary, so completely out of the blue. I wondered how someone who seemed so much at ease and knowledgeable in her role who worked until the end could have succumbed to illness. I had the pleasure of speaking to her on the phone on a few occasions in the past and was pleasantly reassured each time. May she rest in peace.

Such sad news, RIP Hilary

It's hard to come to terms with this. I guess I am still a bit shocked. Hilary was a dynamic personality with a no nonsense atitude but such a big heart. Sending lots of love to friends family and the polio survivors community everywhere.

Very sad to hear the news about Hilary. She worked endlessly to promote P.P.S. and the effects it was having on polio surviviors. I recall when the government decided to re-test people receiving PIP. I contacted her several times for advice - which she gave me - and I was successfu in keeping my benefit. She was larger than life and will be sorely missed. Steve Clynch.

I would like to pass on our deepest condolences to you all and to Hilary’s friends and family. She did so much to help polio survivors and I am sure her legacy will live on. She will be missed by many. RIP Hilary

• In our Summer message (July 12th ) we not only wished you a happy holiday period, but asked you to send us your news of activities, initiatives and events, which some of you have already done so. However with 21 different Member Organisations there is bound to be some sad news,and so it is with great regret that we have to report the sudden death at the age of 77 of Mrs Hilary Boone, the founder and constant Champion and Advocate of the Polio Survivors Network UK (PSN )/ Hilary had just lost her husband Richard ( both polio and Parkinson’s ) and was herself in Hospital for observation. Hilary had an early recognition of Post Polio Syndrome (PPS ),and a huge and valuable knowledge of Polio itself. Hilary was a personal friend of mine, living in the same City of Lincoln, England , she was an active member of the local Branch of the British Polio Fellowship. In her early years Hilary had been a Police Woman, and also a voluntary lifeguard in the small isolated coastal village where I was brought up, and we shared many good friends. Hilary will be greatly missed as a member and supporter of the EPU, and we send our deep condolences to daughter Allison, and son Michael, to all her Family and Friends, and especially her colleagues in the PSN, who took part in our recent AGM in Budapest. DAVID MITCHELL, PRESIDENT EPU ON BEHALF OF THE BOARD OF DIRECTORS.

My most humble condolences go out for Hilary. John’s words above echo mine. I am so saddened. Love to all.

• It as with great regret and sadness that I received the news of Hilary’s passing. She was and always will be regarded with the utmost respect for the ground breaking work she undertook to highlight the plight of polio survivors and the ignorance of the medical profession regarding Post-polio Syndrome. Many have emulated her work but few have surpassed her in innovation, holding authorities to account and giving a voice to polio Survivors around the world. Her passing will be felt around the globally. The only blessing is that she will be at rest and peace with her beloved Richard so their First Nation spirits may wander free eternally. I also speak officially on behalf of the worldwide Post-Polio Syndrome Advocacy Group and the Rotary Club of World Disability Advocacy.

Very sad news indeed. All our support.

So sad to lose Hilary.

I can’t quite remember how I met Hilary. Even though we never met physically she felt like a dear friend. She is an amazing woman especially for polio survivors. I had polio in England at age 7 and was treated at Treloar Rehabilitation Hospital in Farnborough, Hampshire 1954/5. After many months I was released to my parents. I could pass for normal but as my breathing muscles were weak I was subject to pneumonia and hospitalized quite a few times during my school years. As an adult I no longer got the annual pneumonia and lead a pretty regular life: moved to the US, worked, married, adopted two children. Polio was in my past. I didn’t think about it until I had an airway problem at age 47. A trach tube was inserted so I could open the airway at night, and I corked it and went to work during the day. I was OK and it was removed after a year. A few years later I had some breathing issues and was put on a CPAP, then supplemental oxygen was ordered. When you see a doctor they print out your treatment and record. In all caps it said respiratory failure. I went alone to the appointment and was afraid to ask how long I had to live. I just sank into a deep depression. I didn’t die yet thank goodness. I started reading polio newsletters and learning more about post-polio. Hilary said she didn’t know why I was put on supplemental oxygen. It took me a while, but I questioned my doctor about it and he consulted a colleague and agreed that I did not need supplemental oxygen. Hilary liberated me. I am so grateful. Also, I noticed in my list of ailments, respiratory failure has been changed to “chronic” respiratory failure. Seldon is one happy to embrace the word chronic but for this instance I do. This story is not meant to be about me. Hilary put me in touch with other polio survivors and groups. Through her I developed a relationship with a network of other polio survivors. It is so helpful to be able to share with other polio survivors and learn you are not alone. Hilary’s newsletter is so interesting. Her humor comes through -I feel like she is talking to me. One time I told her about a work friend who had to sit on a donut because of the tailbone injury and she laugh because in her mind she pictured a woman sitting on a jelly donut rather than a soft rubber ring. She has been an amazing advocate for polio survivors. When I was telling her about an appointment with a specialist I wanted to disagree with, she said just imagine I am with you sitting on your shoulder when you are at that appointment. You can do it and she was right I did. Hilary begins with H for HEART. Hilary put her whole heart into advocating for polio survivors. H for HOPE. She listened and learned and spread information to give polio survivors hope for the best quality of life possible. H for HELP she lifted people’s spirits with words of advice and encouragement H for HUMOR – laughter is often the best medicine. She will be missed by so many people all over the world.

So sorry to hear this news. Hilary was a hardworking advocate on behalf of people with PPS. She is a great loss to many who benefitted from her knowledge, help and support. RIP.

Hilary was a total inspiration to us all. A force of nature, a wonderful woman. RIP dear Hilary. Xxx

So sorry to hear this news. Someone working tirelessly for others too.

Sadly I never met Hils. She was a tremendous help when I was trying to find out about post polio syndrome. She was a tower of strength and fortitude and will be sadly missed.

How very sad to hear the news of Hilary’s passing. I had only filled in the election candidate today and asked someone to post for me - Hilary had my vote! Condolences to all family - friends and PPS survivors

l will so miss her and her kindness to the world.

Awwww May her soul rest peacefully in the Lord.

Hilary helped so many polio survivors over the years myself included. Without her help I wouldn’t have the help that I have. I will miss her greatly.

I am very saddened by this news

That is indeed sad news. My condolences to her family and those in the organisation who, like yourself were close to her.

Hilary was a lovely woman - one I will miss. I pray she is at peace. Thanks so much for letting us know.

I am so sorry to hear that Hilary has died. She was very kind to me when I was first learning about Post Polio. Her vast knowledge and experience will be sorely missed by the Post Polio family. My condolences to her family and friends.

That is indeed very sad news. I only met Hilary once but found her to not only be straight forward and incredibly knowledgeable about all things connected to polio but incredibly kind and comforting. My sincere condolences to Richard. And to everyone who worked with her.

So sorry to hear this news. What a great lady, very approachable, kind and humorous. She did so much to promote and spread understanding of post polio syndrome.

So sorry to hear this. She will be a great loss to a lot of people. Please accept our condolences

Oh no. I am so sad. She helped me so much even though we never met in person. I am full of gratitude and love for what she has done with her life. What a truly amazing woman and funny as well. Condolences to her family.

I am deeply shocked about the sad news that Hilary has passed away. As long as I remember Hilary has been a fighter in the battle to bring the PPS courae forward, and it is so sad that we have lost her . We will miss her very much. My heart-felt sympathy to her family. May she rest in peace. In sorrow and sadness

This is very sad indeed. Hilary gave me so much information many years ago. I never met her. Please pass on my sincerest sympathies and sadness. I hope that her eulogy will be posted so we can all see what a remarkable and determined person she was. R I P Hilary. Free to roam the universe however she likes .

I am so very sorry to hear this. Please pass my condolences to her family in the knowledge we will all meet again. FIT AND FREE

So deeply sorry to hear this. Her wonderful spirit will be missed by so many

I have just been informed of the sad passing of Hilary. Please let me know of the future developments when you have them funeral etc.

How sad! I have known Hills for over 50 years. We visited when she and her friend came to the US. I believe that was back in the 70s. We truly have lost a wonderful woman, great advocate, supporter extraordinaire. She was always there to listen and to be supportive. She has many friends this side of the pond and will be missed.

I am very sorry to hear this news

So sorry and so soon after her husband

As you know, she was a long-term member of our BPF branch and I have known her personally for some years. I was very shocked to hear the news, wasn’t what I expected although she did look so ill. I texted her most days while she was in hospital. She helped me a lot over the years and I will miss her.

We hope that you find this tribute to Hils a place of comfort, support and inspiration for you to visit whenever you want or need to.

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