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KDA Board Meeting Notes

  • March 2024 Meeting Notes
    1. Updates provided by KDA President:
    1. We’ve received several proposals for the Banbury research grant, submitted by researchers who had attended the KDA-sponsored Banbury conference last September.
    2. A summary paper on SBMA by Dr. Al LaSpada has been added to the KDA website.
    1. Received a report from KDA Vice-president and Treasurer on KDA member Dan Jacobs’s Dim Sum Give Some fundraiser in Milwaukee which they attended earlier this month. Dan, an accomplished chef, will be competing in the 21st season of “Top Chef” starting March 20.  
    2. Received a positive report from KDA Treasurer on finances over the past month, noting that we received some larger donations, including that from the Dim Sum Give Some fundraiser.  
    3. Discussed planning for the 2024 KDA Conference, anticipating that registration for the conference should be available by the end of the month.  
    4. Made a final decision on registration fees for the 2024 Conference.   
    5. Were advised of the requirement to read and sign several governance documents, thereby aligning the KDA with other charities that receive the highest ratings from Charity Navigator.  
    6. Discussed the transition to and training for different data storage and email marketing tools. 
  • February 2024 Meeting Notes
    1. KDA President opened the meeting with some updates, noting first that the KDA was off to a great start in 2024 with a full leadership team in place, better than average January revenue, and a head start on some issues such as conference planning.
    • Since last month, three pharmaceutical companies have contacted the KDA regarding their potential interest in working on SBMA.
    • The Request for Proposal for the Banbury 2023 grant, a follow-up to the SBMA research conference held at the Banbury Center last year, is out with a due date of 15 March.
    • The announcement of the Student Travel Grant, funded by a contribution from Bob Borden, is also out and has received positive feedback from the research community.
    • KDA will be represented at the 2024 MDA Conference in Orlando the first week of March by KDA President and Secretary who will be staffing a booth and providing information about KD and the KDA.
    1. KDA Treasurer provided an update on the KDA’s finances, using a streamlined format to make it easier to see the big picture.
    2. KDA Vice President listed a large number of items to be included in the KDA Newsletter that will be published this month and requested any additional input.
    3. The main topic of discussion was the 2024 KDA Conference. Tentative decisions were made on the conference theme, pricing structure, and virtual broadcast and recording. 

     

  • January 2024 Meeting Notes
    1. Updates from the President: a) The KDA will be embarking on a 5-in-3 fundraising campaign, an ambitious plan to bring in 5 million dollars in donations in 3 years by tapping into more corporate and other charitable funding sources. b) The KDA received several significant contributions toward the end of 2023, including one from LONDC (Late-onset Neuromuscular Disease Consortium) in recognition of Terry Thompson's participation in the newly formed group.  
    2. Received a budget report from the financial team featuring a more condensed depiction of income and expenditures.
    3. Decided to hold the 2024 KDA Conference in Orlando at the Rosen Plaza Hotel from 1-3 November and began discussing related issues that will need to be addressed early in the planning process.  
    4. Approved the proposal to use a $10,000 donation from Bob Borden to fund travel grants to allow students performing research in SBMA to attend conferences for which they would not otherwise have funding and where they could present their SBMA research.  
    5. Discussed and will prepare to decide on the potential move of our meeting and email marketing services to the provider of our website service, thereby reducing costs.  
  • December 2023 Meeting Notes
    1. We were advised of the KDA’s participation in the MDA Conference in Orlando in March and the invitation to join in representing the KDA at the Patient Advocacy Pavilion. Recent KDA research fellowship awardee, Anastasia Gromova, will be presenting a poster at the conference.
    2. Received a summary of a meeting at NIH to view and select a site for the tree KDA is having planted to commemorate the KD-focused work of the NINDS lab under the leadership of Dr. Kurt Fischbeck.
    3. Narrowed down the list of potential 2024 KDA conference venues in Florida and will make the final decision at the January Board meeting.
    4. Discussed specific processes to be implemented to respond to and keep records of emails to info@KDA.
    5. Decided to use Firespring formatting capabilities to help produce the KDA year-end report.  
    6. Discussed how to handle the KDA Treasurer position in David Yelton’s absence.
  • November 2023 Meeting Notes
    1. Terry Thompson provided a strategic update on KDA finances and the process for disbursing funds to recent winners of KDA grants and fellowships. All agreed with the plan to disburse the total amounts in single payments.
    2. Board members who attended the International KD Conference in London provided an update on the event and will include a summary in the upcoming Newsletter.
    3. Discussed possible venues for the KDA 2024 conference and are close to a decision, with Florida a major contender.
    4. Continued the discussion of the process for handling emails received from info@KDA, based on input from JP and RS, who will refine the process and present it to the Board for discussion/approval next month.  
    5. Generated and discussed ideas for recognizing/honoring the contributions of Bob Borden who was taken from us suddenly earlier this month.
    6. Current Board members voted to add Joan Sorenson and Randy Soo Hoo to membership on the KDA Board. Congratulations, Joan and Randy!
  • October 2023 Meeting Notes
    1. Received a status report on KDA funds and how much could be allocated for research awards.
    2. Discussed grant and fellowship proposals for 2023, based on recommendations from the KDA Scientific Review Board.
    3. Decided to award four grants and one fellowship for a total of $437,000.
    4. Agreed to set aside $100,000 for an award proposal from participants in the KDA-sponsored 2023 Banbury SBMA workshop.
    5. Continued discussion of how to handle info@kda emails, after which two Board members volunteered to develop a process offline and present it at the next meeting.
    6. Received an update on the CORDS KD database indicating that the problem with entering data has been solved and that participants would be receiving notices to update their records.
  • 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 2023 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.
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