KDA Board Meeting Notes

During the 2024 KDA Conference, Board members held a joint meeting with the KDA SRB (Scientific Review Board). 

Attending from the SRB: 

• Andy Lieberman 
• Diane Merry
• Chris Grunseich

Attending from the KDA: 

• Terry Thompson 
• Jameson Parker 
• John Lauber 
• Kathy Thompson 
• Simon Hill
• Steve Rittmaster
• Dale Traxler
• Ed Meyertholen
• Guest: Peter Rittmaster

This was a free-flowing session designed to stimulate ideas about the direction of the KDA, research into KD, and how we can work together to further our goals.  

Discussion Highlights

1. Discussed ways in which the KDA Board can help the research effort, including raising more money to bring more researchers into the field and holding more than one Banbury workshop per year.
2. Shared ideas on our next conference and discussed the possibility of holding a 4-day conference modeled on London 2023, with 2 days of patient focus and 2 days of research; attending all 4 days would be optional.
3. Posed a question about whether anyone in the SBMA research community is working on the possible reuse of drugs tried/used for other diseases, e.g., Huntingdon’s Disease, for SBMA.  

• NCATS (National Center for Advancing Translational Sciences), part of NIH, is the organization in the Federal Government that would do the screening of drugs developed for other diseases.  
• NCATS would need a screening plan for SBMA. 
• KDA Board will follow up.

4. Discussed and approved the idea of consolidating KDA’s grant application processes.

1. Updates from KDA President:

• Represented the KDA at the 14 October meeting of the Late Onset Neuromuscular Disease Consortium (LONDC) in Savannah. LONDC includes 17 neuromuscular diseases, of which KD is one. 
• Informed the Board of the sale of Hedley&Bennet aprons to benefit the KDA sponsored by Dan Jacobs, KDA member and finalist in the Top Chef Milwaukee competition held earlier this year. 

2. Introduced Donna Short, consultant and patient advocacy specialist, who graciously volunteered to sit in on the meeting and share some of her expertise with the Board.
3. Financial Update:

• KDA Treasurer provided a financial update in preparation for the discussion of annual grants and fellowships and the resources available to cover them.

4. Deliberated and decided to award three grants and one fellowship for 2024, for a total of $330,500. Of note is that two of the grants went to biotech start-up companies to develop potential therapies. See the KDA webpage for details.
5. Discussed last-minute details relating to the KDA 2024 Conference.
6. Due to lack of time, delayed follow-on discussion of the Research Partnership Maturity Model for Patient Organizations until the next meeting.

1. Updates from KDA President:

• The KDA-sponsored Banbury research conference (8-9 September), focusing on protein quality control in SMBA, was judged extremely productive. Of note was that the researchers asked many questions about men’s symptoms.
• The SRB’s evaluations of this year’s grant and fellowship proposals are expected before the end of the month and will be discussed at next month’s Board meeting.  

2. Financial Update:

• August was a relatively quiet month with the exception of $8K in donations from the Montie 5K fundraiser.
• Our first annual third-party financial review has been completed.

3. Decision was made to change the KDA mailing address from a P.O. box to a physical address. SR and JL are working on various aspects of the change.
4. Update on KDA 2024 Conference:

• Final details are being worked out, the agenda is nearly in final form, we’ve nearly reached the maximum number of attendees, and the number of researchers attending may be the highest ever.

5. Decision was made not to hold the November Board meeting at the conference.
6. Board members spent the remainder of the meeting time discussing the Research Partnership Maturity Model for Patient Organizations to generate ideas on how we can be more effective in engaging with patient and research communities, working with industry, finding more funding sources, and accelerating research toward a cure.  

1. KDA Treasurer reported that the review of 2023 financials has started and is progressing smoothly.
2. Update on KDA 2024 Conference: The draft agenda has been released and is available on the KDA website; the pace of registration indicates that the maximum number of attendees will soon be reached; the Rosen Plaza is booked through 31 October but still has availability for our dates of 1-4 November.
3. As a follow-up to an initial presentation last month, KDA President briefed on the formation of a fundraising committee, composed of Board and non-Board members, to advise and develop plans to increase the fundraising capacity of the KDA. Board members approved the approach, responsibilities, and schedule. 
4. Board members spent the remainder of the meeting time engaged in a team building activity.  

1. Updates provided by KDA President:

1. The LONDC is now looking for clinicians (general practitioners, neurologists, nurses) to attend their presentation in Savannah in October.  
2. Chris Grunseich of NIH presented an excellent briefing on SBMA at an MDA webinar earlier this month.  

2. After a short discussion the Board decided to confirm its decision to drop Zoom and turn over to Microsoft Teams for its meetings and other online discussions.
3. Update on KDA 2024 Conference: Registration is going well, to the point where we may have to cap registrations since we cannot procure a larger space at the hotel. The draft agenda will be released this week.
4. Following KDA Treasurer’s briefing on our financial situation, the Board decided on target funding for this year’s grants and fellowships.
5. KDA President gave a presentation on fundraising and announced the establishment of a fundraising committee to help take KDA to a higher level of funding potential. 

1. Updates provided by KDA President:  

1. We have received or have commitments for two large donations totaling $25,000 for conference support, as well as $105.000 in two grants for education and research.  
2. KDA member Dan Jacobs has made it to the finals of Top Chef. We are all rooting for you, Dan, and wish you all the best for next week! 

2. Update on KDA 2024 Conference: 

1. We have met our room-night obligation at the Rosen hotel and have a total of 67 people thus far registered to attend in person, which indicates attendance is going to be high this year. 
2. A draft agenda will be released later this month. Patient-focused talks are nearly in final form, while we’re still working on the research portion. 

3. Discussed the proof draft of the 2023 Annual report, which for the first time was professionally formatted, and will be making final edits within the next few days. 

4. Discussed patient support issues, including the establishment of the Caregiver Support Group run by Anita Kowalski.

5. Voted to approve the two highest-ranking proposals for Banbury 2023 grants.

6. Voted to approve the Treasurer’s motion for a financial review, which will enhance our compliance with financial best practices as we grow our fundraising to the next level.

1. Updates provided by KDA President:  

1. On May 1 KDA President and Secretary were at NIH for the planting of the KDA-sponsored commemorative tree at NIH to mark the retirement of Dr. Kenneth (Kurt) Fischbeck and the outstanding work done by the Neurogenetics Branch he led for 25 years. Dr. Fischbeck was in attendance along with Branch members and other colleagues with whom he had worked during his NIH career.  
2. KDA has reached out to NORD (National Organization for Rare Diseases), of which it is a long-time member, to seek closer cooperation and take greater advantage of the help and expertise it may offer. 

2. The Treasurer is embarking on an effort to set up financial files for Board access in SharePoint, thereby eliminating the need to send them as email attachments.

3. KDA Conference update:

1. Registration is going well, with numbers ahead of previous years’. 
2. The draft agenda received favorable comments and will soon be ready for publication.  
3. Another announcement will be going out before Memorial Day weekend.   

4. KDA Vice President reported that a draft of the KDA 2023 Annual report will be ready before the next meeting.

5. Patient and General Support:

1. We are up to date in organizing and responding to info@kda emails. 
2. We need to engage medical experts to help respond to medical questions that come in. 
3. The Men’s Support Group hopes to expand its reach. 
4. We may have found a leader for the Women’s/Caregivers’ Support Group. 
5. The Carrier Group is compiling a list of symptoms experienced by carriers.    

6. The Board reviewed and discussed the KDA Bylaws with a view to updating them.

7. Began a discussion of ramping up our fundraising efforts, focusing on the importance of doing something now, particularly in view of the increased prevalence of the KD gene mutation and developments in research and clinical trials. 

1. Updates provided by KDA President:  

1. Chris Grunseich has been appointed to the Scientific Review Board.  Chris is an SBMA researcher and lead clinician at the National Institutes of Health (NIH) in Bethesda, Maryland.
2. Plans are underway for delivery and planting on May 1 of the KDA-sponsored commemorative tree at NIH to mark the retirement of Dr. Kenneth (Kurt) Fischbeck and the outstanding work done by the Neurogenetics Branch he led for 25 years. 
3. KDA received and approved the first proposal for a travel grant for a junior researcher. 
4. Several Board members participated in the survey conducted by the Late Onset Neuromuscular Disease Consortium, a group working under the American Neuromuscular Foundation. 

2. The Treasurer’s report highlighted the fact that we are ahead of budget expectations for the first quarter of the year, with higher than anticipated donations thanks to the Bay Area Rare Disease Day event, the Dim Sum Give Some fundraiser and early donations from the KD Golf Scramble. KDA’s tax returns for 2023 have been completed and circulated to Board members for review and comment.  In addition, thanks to John Lauber’s initiative, KDA has a new LinkedIn presence, which all Board members were invited to share with their personal Li networks. 
3. The KDA 2024 conference in Orlando, Florida will be announced and registration opened within the next week.  Information about the conference will be posted on the KDA website, and the announcement will be emailed to all KDA members. (Note: Registration for KDA 2024 opened on April 16.) 
4. The Vice President is completing the draft of KDA’s 2023 annual report that will be submitted for publication by the end of April. 
5. The President led a discussion of creating functional committees based on the activities already performed by Board members. This led to an expanded discussion of Board composition and a suggestion to review KDA’s bylaws to determine if any amendments are required. 

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.

2. 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.  
3. 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.  
4. Discussed planning for the 2024 KDA Conference, anticipating that registration for the conference should be available by the end of the month.  
5. Made a final decision on registration fees for the 2024 Conference.   
6. 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.  
7. Discussed the transition to and training for different data storage and email marketing tools. 

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.

2. KDA Treasurer provided an update on the KDA’s finances, using a streamlined format to make it easier to see the big picture.
3. 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.
4. 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. 

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.  

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.