Philanthropy and rare disease are the topics in this week’s show, after a global news review with Sasha Kehoe.

Philanthropy for Brain Research and Rare Disease

What would you do if you had a spare €10,000 or more to donate? Well, the University of Luxembourg has just opened up a new fund to tackle Alzheimers, Parkinsons, and Rare Diseases. You could become part of their ‘Champions Circle’ and get to know the researchers, the cutting edge development and help shape the future for so many people in the world with these conditions. Research is expensive and philanthropy can be targeted giving, where you get to make a difference during your lifetime. 

Naturally another way to give is to leave a legacy through your will. As an entirely separate aside, it is always a good idea to leave a written will. The act of writing one can crystallise what matters most to you once you’re gone, and therefore perhaps what matters most to you whilst you live. 

Philippe Lamesch created and leads the Fundraising Office at the University of Luxembourg. His own background is in biological sciences, firstly at Namur in Belgium, followed by research at the and then the Carnegie Institution for Science at Stanford University.

https://www.uni.lu/en/about/fundraising/how-to-donate/

Daniela Ragni, Director of the André Losch Foundation, talks about his legacy.  Given that he didn’t have his own children, he created the foundation with a mission is to support youth, education and social inclusion. They work in partnerships with people and organisations over a number of years to make real and lasting changes within our community. 

Daniela herself spent a couple of decades working for non-governmental organisations trying to raise money and now finds herself on the other side of the this equation, developing relationships with organisations and individuals who need financing for their ideas for the social good of the community, always with a focus on young people. 

https://www.loschfondation.lu

Rare Disease

Associate Professor Dr. Carole Linster’s scientific work has made her the leading researcher on rare childhood disease in Luxembourg. Her biomedical science studies started in UC Louvain in Brussels, followed by the prestigious de Duve Institute there, followed by UCLA in California. Here she discovered enzymes that plants depend on to produce vitamin C.

Carole and co-workers also discovered several new enzymes of human metabolism, involved in the breakdown of metabolic side products that become toxic when left to accumulate.

In collaboration with researchers from Australia, the US, and the UK, the Linster group identified a novel infantile rare neurodegenerative disorder that is caused by the deficiency of one of those metabolite repair enzymes (NAXD). 

Carole talks about the fundamental global research that is necessary in order to tackle rare disease, which is not really that rare by definition. It is extremely time consuming for talented scientists to write proposals for grants and other fund opportunities. For this reason again, the idea of university led funds, or partnerships with organisations such as André Losch which can extend over years, takes some pressure off the constant need to ‘ask’ for money.

Sip of Self-Care

Dr. Laura Riordan flew over from Lisbon to join our conversation. She is an Executive and Career Transitions Coach with a Ph.D. in psychology and over 20 years of coaching experience.

Through her work of creating the Sustainable Mom methodology, Laura has extended her knowledge to the world of Raregivers - caregivers within families of Rare Disease. From 2019, Laura has developed retreats for rare caregivers to find relief in a supportive community and bolster their self-care practices to sustain themselves and their families at home.

Laura talks about the need to look after one’s own well-being in order to support a child with a chronic condition. We talk about the diagnosis odyssey, on average 5-8 years with a rare disease. This limbo in itself is a source of immense pain and stress for a family, layering on top financial stressors when often one parent has to give up work to care for a child.

The Raregiver’s guide trains caregivers and medical professionals on the Raregiver’s methodology, a research-based stress relief methodology shared through peer-to-peer support groups and emotional witnessing workshops.

The Raregivers organization is singularly focused on providing necessary mental health and wellness services to raregivers - from sustainable psychosocial training and transformative retreats to a connective peer-to-peer multilingual network. Raregivers currently supports over 22,000 rare families across 33 countries. https://www.raregivers.global

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