Fundraising campaign by the Mühlacker Lions Club for Hoffnungsbaum e.V.

Fundraising campaign by the Mühlacker Lions Club for Hoffnungsbaum e.V.

Mühlacker, December 2022: As part of a club evening organized by the Mühlacker Lions Club, board member Hoffnungsbaum e.V. Board member Tiemo Durm had the opportunity to give a presentation about the association and its aims and background. The content was very well received by the Mühlacker Lions Club, which is why it was decided at its board meeting and general meeting to support Hoffnunsgbaum e.V. with a suitable fundraising campaign.

Picture: Donation handover - 5000 € from the Lions Club Mühlacker to Hofnungsbaum e.V.

This plan was immediately put into practice and the entire proceeds from the Lions Club sales stand at the Mühlacker Christmas market were donated to Hoffnungsbaum e.V. donated. The board of the Lions Club even decided to round up the sum collected from food and drink sales to an even €5,000 and donate it to Hoffnungsbaum e.V. to support further meaningful and high-quality research projects in the field of PKAN research.

Hoffnungsbaum e.V. would like to thank the Lions Club Mühlacker once again for their commitment and willingness to help!

As this presentation and the contact between the Lions Club board and Tiemo Durm that has existed since then may lead to the acquisition of further potential organizations, we would like to draw attention to the enormous reach and opportunity of such campaigns within the framework of the fundraising working group and motivate all club members and Hoffnungsbaum supporters to undertake similar campaigns. Various information material and general assistance in carrying out such campaigns can be requested from us at any time. Take courage - every single action counts and will hopefully help to develop and implement effective therapies for those affected.

Results of the Hoffnungsbaum survey 2020

Results of the Hoffnungsbaum survey 2020

In the period August - September 2020 Hoffnungsbaum e.V. conducted a broad-based opinion survey among all association members and NBIA families in Germany, Austria and Switzerland with whom we are in contact. The aim of the survey was to explore important and current issues to ensure the future viability of the association as well as the efficient and goal-oriented direction of the association's future work based on the needs of members and NBIA sufferers.
With a statistically very pleasing result of 30% participation rate and 74% completion rate (participants who answered the survey to the end), the survey achieved a good response among the participants and was therefore able to collect valuable feedback on all the categories surveyed. Of the responses received, 68% were from within the association (members) and 32% were external opinions. The most important survey results are summarized briefly below. They were also discussed at an extended Board meeting on 22.10.2020 and helped the Board to derive and decide on appropriate action strategies for the future:

  • Establishment and continuation of digital dissemination of current news (newsletter & news entries on the website) at needs-based intervals, including partial translation into English
  • Needs-based digital distribution and forwarding of information from partner organizations and umbrella associations of Hoffnungsbaum e.V.
  • Retention of the findings and consultation folders in paper form and as a digital file package for all families affected by NBIA
  • Further expansion and continuous updating of the website (www.Hoffnungsbaum.de), which was completely redesigned in 2019, as a central information platform
  • Increase active exchange and general activities in the family network
  • Development of a central strategy for all active HoBa members and supporters for the broadband implementation of simple ways to carry out fundraising campaigns
  • Examination of the implementation of NBIA variant-specific and other topic-related WhatsApp groups and Instagram accounts
  • Recruitment of additional voluntary association members to ensure the future viability of the association through a broader distribution of the diverse tasks in the context of the current generational change

We hope to be able to address these issues as quickly as possible and use this valuable feedback to steer the association optimally into the future.
Once again, MANY THANKS to all survey participants for your support and your contribution to the hopefully continued successful future of Hoffnungsbaum e.V.

Thank you very much for your support.
The Executive Board of Hoffnungsbaum e.V.

 

PS: If you have any good ideas and/or motivation to work on the above-mentioned topics or on the association's work in general, we would be delighted to hear from you. Hoffnungsbaum e.V. we would be very pleased to hear from you:

info@hoffnungsbaum.de or via the Contact form

Subscribe to our Hoffnungsbaum newsletter!

With our newsletter e-mails you will receive valuable information about NBIA. If you would like to receive additional information on individual NBIA variants or special information for researchers/clinicians in addition to the general newsletter, please click here: Subscribe to additional information

Privacy policy

You have successfully registered!

*Mandatory information, you can unsubscribe from this service at any time.