Are you an international KAND patient or family member? Welcome! We have a dedicated group of volunteers eager to connect with you, and they are multilingual KAND parents!

The Ambassadors are knowledgeable about KAND, KIF1A.ORG, regional KIF1A information, and they are multilingual. If you are from a country listed below, please connect with your Ambassador for more information and assistance in your unique journey with KAND. They can help translate, share information about physicians in your area, and connect you with other KAND families close to you.

If your country doesn’t have an ambassador, and you are interested in volunteering for this role, please reach out to impact@kif1a.org.

Spain

+ Spanish and Portuguese speaking countries including Portugal, Brazil, Argentina, Chile, Columbia, Ecuador, & Mexico

Alejandro Doval & Maribel Saez

Co-Founders of KIF1A Spaininfo@kif1a.es

Alejandro Doval, and Maribel Saez are the Founders and Executive Directors of KIF1A.ES, Spain. Alejandro and Maribel are relentless in their passion to strengthen research initiatives, and develop our growing KAND community in Spain. They are key members of the KIF1A.ORG leadership team, and most important, parents to the mighty Mario. Visit the Spain website here: www.kif1a.es.

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France

Audrey Guilmatre

Co-Founder and President of KIF1A Francecontact@kif1a.fr kif1a.france@gmail.com

Audrey Guilmatre is the president and co-founder of KIF1A France. She is the mother to Hugo who was born in 2017 and diagnosed with KAND in 2020. She has a PhD in genetics. With a career in translational and clinical research and a passion for science, her goal is to develop research for KAND in France and to help families to participate in ongoing research projects. Together with the other members of KIF1A France, she also aims to support and inform French speaking families thanks to her scientific background and to communicate about KAND. Our relentless French speaking KAND community is growing. Visit our website: https://kif1a.fr

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Emeline and Pierre Goaziou

Secretary and Treasurer of KIF1A Francecontact@kif1a.fr kif1a.france@gmail.com

Emeline and Pierre Goaziou have participated in the creation of the KIF1A FRANCE association. They are parents to Ellie, an always smiling girl born in 2020 and diagnosed with KAND. They respectively volunteer as secretary and treasurer : they do their best to help newly diagnosed families and share info with non english speakers. With other members of KIF1A FRANCE, they advocate for KIF1A-related diseases being known better in France and to develop research initiatives in Europe. Visit the association website here: https://kif1a.fr

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Germany

Dr. Madlen Wollersheim

German KAND Ambassadorimpact@kif1a.org

Hi!

This is just a brief introduction: I was very happy to find the KIF1A.ORG support group in 2019, when my son, very severely affected, was finally diagnosed with KAND at the age of 26. I remember how good it felt to finally not be completely alone.

Since then, the organization has been fantastically successful and I appreciate being able to help other German-speaking neighbors to find information on the illness.

By training a molecular biologist, I held jobs in research, science politics, product management, project management and science journalism. Now, I am now trying to get the best quality of life for my son and pursuing a nice work-life balance.

Italy

Ennio and Benedetta Lamari

Italian KAND Ambassadorinfo@kif1a.it

English:

Ennio is Alessandro’s father, a KIF1A Super-Hero born in 2018 and diagnosed with KAND in 2021. He is co-founder and president of KIF1A ITALIA (www.kif1a.it).

He is happy to be meeting new families and talking about how to practically face KAND in Italy, taking care of our children while waiting for a cure.

While not being an expert but just a dad, he aims to understand scientific concepts related to KIF1A gene mutations and explaining them in “lay-mans” terms, in order to share knowledge in an easy and friendly way.

If you are an Italian interested in KIF1A and KAND, don’t hesitate to contact him and get in touch with the other Italian families!    

Italian:

“Ennio è il papa di Alessandro, un “Super Eroe KIF1A” nato nel 2018 e diagnosticato KAND nel 2021. E’ cofondatore e presidente di KIF1A ITALIA (www. kif1a.it).

Ha piacere di incontrare nuove famiglie e parlare di come affrontare in modo pratico la KAND in Italia, per prendersi “cura” dei nostri bambini in attesa della “cura”.

Sebbene non sia un esperto, ma solo un papà, si propone di comprendere i concetti scientifici relativi al gene KIF1A e illustrarli in termini non tecnici, al fine di condividere le conoscenze in modo semplice e familiare.

Se sei interessato a/da mutazioni del gene KIF1A, non esitare a comunicare con lui ed entrare in contatto con le altre famiglie italiane!”

Poland

Aleksandra Czerniak

Polish KAND Ambassadorkif1a.poland@gmail.com

Aleksandra is primarily known as a mother to Mikołaj (https://www.kif1a.org/blog/mikolajs-superhero-story/), one of the KIF1A heroes in Poland, being the first diagnosed child in the country. She became part of the KIF1A community in 2018 and participated in person in both International KIF1A Conferences in 2019 and 2023.

With a medical degree, specializing in radiology and diagnostic imaging, Aleksandra brings a unique perspective to her role. Her career in medicine has equipped her with a deeper understanding of the challenges faced by individuals with rare diseases. She is dedicated to supporting Polish-speaking families, offering knowledge, sharing experiences, and providing guidance to newly diagnosed families. Additionally, she aims to bridge the language barrier by offering support and resources for non-English-speaking patients, together with her husband Maciej, Mikolaj’s father.

In her free time, Aleksandra enjoys traveling, skiing, meeting new people, and indulging her passion for painting, where she embraces her artistic side.

Feel free to reach out to Aleksandra if you need assistance or guidance. She is here to help whenever you need it.

United Kingdom

Sally Blaxall

United Kingdom KAND Ambassadorimpact@kif1a.org

My identical twin daughters’ Eleanor & Florence were diagnosed in 2015, aged 18, and are now 26 and living in Supported Living during the week with 24 hour care in Maidstone in Kent, 30 mins from our home and return home most weekends. Once a month they stay at their Supported Living home at the weekend to give some respite for myself and my husband.
Having lived through the UK “system” I hope to help those families in the UK navigate their own paths and have met with other families in London for lunches which we have all enjoyed, sharing experiences and stories.

Australia

Gary Boyer

Australian KAND Ambassadorgazboyer@gmail.com

Primarily, Gary is a father of Edward, Azalea and Oliver and a husband to wife Catherine.  He has been heavily involved in KIF1A.org since 2019, his motivation assisting to find a cure that will improve Edwards quality of life, but also wanting to help all the impacted people who have KIF1A so that it is permanently cured and the kids and families can live a normal life.

Gary lives in Bendigo, a small town in Victoria, Australia.  He liaises with local researchers in Australia at Murdoch Childrens Research Institute at the Royal Childrens Hospital in Melbourne and Childrens Medical Research Institute at Westmead Hospital in Sydney.  He also loves meeting new families and talking about the possibilities a future of a world where KIF1A no longer is an issue.  While not being an expert and is “just a dad”, he is good at understanding scientific terms and explaining them in “lay-mans” terms so that scientific messages can be better understood.

He is a board game lover and regularly travels internationally for board game events.  He is also known to pretend to be good at golf as well as enjoy watching Australian Rules Football.

Canada

Salima Shivji

Canadian KAND Ambassadorimpact@kif1a.org

Salima joined the KIF1a family support group in 2022 after her 17 year old daughter Sophia was diagnosed with KAND. She has worked part time in her career as a dentist alongside being a very involved and strong advocate for support, inclusion and therapy for Sophia. Her passion is to be able to do as much as possible to enable families and children with disabilities to access and participate as much as possible in daily life and help provide support to families facing the many challenges that present themselves. Having been on this journey for 17 years with Sophia, Salima has gained much insight into many aspects of daily living skills, social support and education and currently she is enrolling in a program to become a qualified rehab assistant. Salima is excited to both learn, grow  and contribute with the KIF1a organization.

Romania

Catalin Chicioroaga

Romanian and Republic of Moldova KAND Ambassadorimpact@kif1a.org

Hi!

I am the father of Erica Maria , a Kif1a Super Hero girl  from Romania.

Erica is the first patient born in Romania with this diagnostic. I am glad to help other family from Romania and near Romania. I also founded an ONG  that  helps  other children that have neurological problems.

Feel free to write me or ask me any question. I like to make friends from all over the world and to help children.

Thank you!

China

August Shang

Chinese KAND Ambassadorimpact@kif1a.org

中文:我是叶帆的父亲,叶帆是一名KIF1A超级英雄,出生于2022年,2024年被诊断出患有KAND。在搜索KAND相关信息时,我发现了KIF1A组织,并结识了国内其他一些患者家庭。我们在中国建立了KAND社区,旨在提高这些KAND患者的生活质量。我在大学主修生物学,对遗传疾病的生物技术治疗有一定的了解。我非常愿意以公众更容易理解的方式,与更多的患者家庭分享我对KIF1A基因相关疾病和最新研究内容的了解,以减轻他们对未知的恐惧。我很高兴能与KIF1A组织一起学习和做出贡献。欢迎中国家庭与我联系,我们可以一起分享经验和故事。

English: I am the father of Yvian , a KIF1A Super-Hero born in 2022 and diagnosed with KAND in 2024. When I was looking for information about KAND, I found the KIF1A organization and also got to know some other patients’ families in China. We have established a KAND community in China to improve the quality of life of these people affected by KAND. I majored in biology in college and have a certain understanding of biotechnology in the treatment of genetic diseases. I am very willing to tell more patients’ families what I know about kif1a gene-related diseases and the latest research content in a way that is easier for the public to understand to relieve their fear of the unknown. I am excited to learn and contribute with the KIF1A organization. Welcome Chinese families to contact me, and we can share experiences and stories together.