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KDA Board Meeting Notes

September 2023 Board Meeting Highlights

  1. Jameson Parker provided an update on the KDA-sponsored research workshop held at Banbury on September 10 & 11, noting that it was a great investment for the KDA and that the participants are preparing a paper summarizing key points and next steps for KD research.
  2. Discussed the fall fundraising campaign and made refinements to the letter that will go out to potential donors.
  3. Reviewed the process for handling emails received from info@KDA and will follow up with ideas for making it more efficient.  
  4. Discussed the 2023 KDA grants and fellowships program but deferred decisions on approvals until next month when the SRB has completed its review process.
  5. Received a briefing comparing two different donor management systems in preparation for making a change in 2024 to expand our donor base, engage corporations and foundations, track donors/donations more efficiently, and generally improve our fundraising process.
  6. Discussed the results of the genetic knowledge survey and identified topics that should be included in our education initiatives, e.g., conference presentations on the inheritance pattern of the KD genetic mutation and sessions directed specifically toward the men’s and carriers’ groups.
  7. Discussed problems that have arisen recently with attempts to solicit birthday donations via Facebook and determined that the best remedy is for users to direct donations to the KDA by providing a direct link to the donation page as part of their FB post. 
  • September 2023 Meeting Notes
    1. Jameson Parker provided an update on the KDA-sponsored research workshop held at Banbury on 10-11 September, noting that it was a great investment for the KDA and that the participants are preparing a paper summarizing key points and next steps for KD research.
    2. Discussed the fall fundraising campaign and made refinements to the letter that will go out to potential donors.
    3. Reviewed the process for handling emails received from info@KDA and will follow up with ideas for making it more efficient.  
    4. Discussed the 2023 KDA grants and fellowships program but deferred decisions on approvals until next month when the SRB has completed its review process.
    5. Received a briefing comparing two different donor management systems in preparation for making a change in 2024 to expand our donor base, engage corporations and foundations, track donors/donations more efficiently, and generally improve our fundraising process.
    6. Discussed the results of the genetic knowledge survey and identified topics that should be included in our education initiatives, e.g., conference presentations on the inheritance pattern of the KD genetic mutation and sessions directed specifically toward the men’s and carriers’ groups.
    7. Discussed problems that have arisen recently with attempts to solicit birthday donations via Facebook and determined that the best remedy is for users to direct donations to the KDA by providing a direct link to the donation page as part of their FB post.  

     

  • August 2023 Meeting Notes
    1. We’ve had a great response to the Japanese Genetic Knowledge Survey from both KD men and carriers.
    2. A page will be built on the KDA website for posting and printing the one-page information documents on KD.
    3. The MDA has invited two SBMA clinicians, Chris Grunseich (NIH) and Tahseen Mozaffar (UC Irvine), to be part of their 2024 MedEd seminar.
    4. Continued the discussion of increased interaction with the MDA and coordination with them to have SBMA genetic testing offered at their clinics
    5. Decided to implement a fall fundraising campaign to address a recent increase in funding requests from the research community.
    6. Discussed a proposal to include periodic profiles of Board members in the KDA Newsletter and decided to broaden it to include researchers and KDA members.
    7. Decided to add an additional member to the KDA Board while continuing the discussion of the composition of the Board.
  • July Meeting Notes
    1. Discussed KDA finances in the context of grants and fellowships, deciding on a larger than usual funding allocation based on a greater number of proposals received this year.
    2. Continued discussion of KDA Board composition and agreed to postpone a decision until next month pending additional research. 
    3. Discussed and decided to distribute the Japanese Genetic Knowledge Survey to KDA membership.    
    4. Discussed a proposal to help fund KD patients’ visits to MDA clinics which will require further coordination before deciding on implementation.  
    5. Discussed and will begin researching the idea of developing an SBMA curriculum for doctors/neurologists to obtain CME (Continuing Medical Education) credits while learning more about KD.  
    6. Discussed the status of and issues associated with updating the list of doctors familiar with KD on the KDA website. Decided to use the Newsletter to engage the KDA community in this effort.    
    7. Received a progress report on the development of one-page KD information sheets.


       
  • June 2023 Meeting Notes
    1. KDA President’s Updates:
    • Proceeds from the 2023 Texas Golf Scramble will be used to fund the KDA’s 2023 SBMA Research Workshop at the Banbury Center in NY.
    • The KDA website now includes information on NIDO-361, the drug developed by Nido Biosciences to treat KD that is nearing clinical trial stage. In addition there is now a link to the MDA page that provides a clear description of the phases of clinical trials.  
    • There is a tentative agreement with the MDA to share the French protocol for treating KD with its adult care centers.
    • Met with past KDA presidents who agreed to act as an informal advisory committee on fundraising.
    • Board was briefed on how its financial contribution to the 2023 Global KD Conference in London will be used.
    1. Discussed in depth the composition and operation of the KDA Board.
    2. Discussed the need for volunteers and decided to put a notice on the KDA website on where/how to sign up to volunteer.  
  • May 2023 Meeting Notes
    • Discussed a proposal to provide an information package on KD to MDA facilities; decided to contact MDA HQ to discuss this and potentially have MDA distribute it to branch centers.
    • Agreed to contact NIH and work with them to develop 1 or 2-page information sheets on exercise and speech & swallowing for KD patients to share with their doctors and physical therapists.
    • Continued the discussion of KDA’s financial status and ways to make the most of our resources.
    • Discussed the NIH grants process and implications for the KDA.
    • Learned that the registration page for the International KD Conference was up in draft form – now up and running – and voted to offer some financial assistance to help offset the costs of the conference which will be free for all attendees.   
    • Discussed the process for donating in someone’s memory on the KDA webpage and decided to add some language to make it clearer.  
    • Continued the discussion of how best to update and maintain the list on the KDA webpage of doctors familiar with KD.
  • April 2023 Meeting Notes
    • Learned that KDA President Terry Thompson has been invited to be a member of the Steering Committee of the LONDC (Late Onset Neuromuscular Disease Consortium)
    • Discussed the financial status of the KDA and possibilities for offsetting the decline in donations.
    • Discussed items for the next KDA Newsletter, expected to be published near the end of the month.
    • Discussed and approved funding for the second year of Dr. Shinichiro Yamada’s grant
    • Discussed the feasibility of distributing Japan’s genomic knowledge survey to KDA members.
    • Received a status report on the 2023 KD Global Conference in London, anticipating that registration and more detailed information will be available to KDA members by the end of April.
  • March 2023 Meeting Notes
    • Discussed and approved the new KDA website, with kudos to Ron Moffet who guided its development.
    • Decided to add to the website a section on highlights from KDA Board meetings.
    • Discussed and resolved issues relating to KDA grants and fellowships policy.
    • Received a status report and discussed the Global KD Conference to be held in London this November.
    • Decided that it would not be necessary to amend the KDA mission statement to accommodate funding DNA testing to diagnose KD.
    • Discussed and approved the 2022 Annual Report, with thanks to Jameson Parker for his work on it.
  • February 2023 Meeting Notes
    • Approved funding for an SBMA Research Workshop to be held in September 2023, with the aim of attracting more scientists into research on Kennedy's Disease.
    • Discussed progress in the development of the new KDA website.
    • Discussed the KD Men's Support Group initiative.
    • Agreed to review draft of the KDA 2022 Annual Report.
    • Discussed and approved publication of a financial aid form for people who may need funding for a diagnostic blood test for KD.
    • Discussed the 2023 "International Kennedy's Disease" conference to be held in London in November.
    • Approved Kathy Thompson as interim KDA Secretary to replace Simon Hill who will remain on the Board.
  • January 2023 Meeting Notes
    • Welcomed Bob Borden as the co-editor (with Jameson Parker) of the KDA Newsletter.
    • Approved Treasurer David Yelton's recommendation to file KDA regulatory documents for select states.
    • Approved Ron Moffett's recommendation for a new website developer.
    • Discussed initiative to offer KDA funding for people needing financial assistance for the diagnostic blood test for KD.
    • Discussed content for the KDA Winter Newsletter.
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