Chelsea's Hope Lafora Children Research Fund

As part of our holiday auction to support the ION283 safety study, we're thrilled to share you can bid on the Tuscan Treasures Vacation! ???? Explore centuries of Tuscan art, culture, and cuisine with local recommendations and insights from your destination experts when you stay in a historic apartment in the heart of Cortona: ?? up to 4 guests for 7 nights ?? your trip includes a guided walking tour ?? complimentary wine tasting ?? you have 2yrs after winning to travel Again, all proceeds will go to the ION283 safety study, benefitting ten patients with Lafora disease! ?? Find more details and bid today to make a difference: https://lnkd.in/ebUt-JCU Your participation is more than a trip to Italy - it’s a chance to change the future for children fighting this rare disease. #ChelseasHopeLaforaCure #LaforaDisease #RareDiseaseAwareness #ChelseasHope #RareDisease #PatientCommunity #FightLafora #Charity #CharityAuction #SilentAuction #OnlineAuction #VacationAuction #TravelAuction #StartBiddingNow #LaforaAuction24 #TuscanTreasures #LuxGive

?? Apply to be the next Treasurer of the Board of Directors! The treasurer will: 1. Review and maintain adequate and correct accounts of the corporation’s properties and business transactions, including accounts of its assets, liabilities, receipts, disbursements, gains, and losses. 2. Exhibit at all reasonable times the books of account and financial records to any director of the corporation, or to their agent or attorney, on request therefore. 3. Render to the president and directors, whenever requested, an account of any or all of their transactions as treasurer and the corporation's financial condition. 4. Prepare, or cause to be prepared, and certify, or cause to be certified, the financial statements to be included in any required reports. 5. In general, perform all duties incident to the office of treasurer and such other duties as may be required by law, by the articles of incorporation of the corporation, or by these bylaws, or which may be assigned to them from time to time by the board of directors. All members of the Board of Directors are expected to: ???? Attend the monthly board meetings (of which four are mandatory) ?? Serve on at least one committee for the organization ?? Be willing to assist with special events at the organization, including but not limited to our Annual Symposium, Family Q&A Sessions, conference presentations, and fundraising events. ?? Apply here by Friday, November 29th: https://lnkd.in/eQws-M8R ?? the current #BoardOfDirectors at the 2024 Lafora Science Symposium. #Volunteer #NonprofitBoard #Governance #Fundraising #FightLafora #ChelseasHope #RareDiseaseAdvocacy #Nonprofit #OpenPosition

BID NOW: Butterfly painting by Angelina ?? Many of you know Angelina's story of battling Lafora disease. You might not know that she loves butterflies! Here's more about this special item available for bidding: ?? Ange painted this in March 2023 with her art therapist. ???? Extra shipping costs may be required for international bidders. ?? The current bid is $190. All proceeds will go to the ION283 safety study, benefitting ten patients with Lafora disease! ?? Find more details and bid today to make a difference: https://lnkd.in/dtXrh-yK Your participation is more than winning a one-of-a-kind artwork - it’s a chance to change the future for all children fighting this rare disease, like Ange. #FightLafora #LaforaAuction24

?? Apply to be the next Secretary of the Board of Directors! The secretary will: 1. Certify and keep the original, or a copy, of these bylaws as amended or otherwise altered to date. 2. Keep at the principal office of the corporation or at such other place as the board may determine, a book of minutes of all meetings of the directors, and, if applicable, meetings of committees of directors and of members, recording therein the time and place of holding, whether regular or special, how called, how notice thereof was given, the names of those present or represented at the meeting, and the proceedings thereof. 3. See that all notices are duly given in accordance with the provisions of these bylaws or as required by law. 4. Be custodian of the records as authorized by law or the provisions of these bylaws and duly executed documents of the corporation. 5. Exhibit at all reasonable times to any director of the corporation, or to their agent or attorney, on request therefore, the bylaws and the minutes of the proceedings of the directors of the corporation. 6. In general, perform all duties incident to the office of secretary and such other duties as may be required by law, by the articles of incorporation, or by these bylaws, or which may be assigned to him or her from time to time by the board of directors. All members of the Board of Directors are expected to: ???? Attend the monthly board meetings (of which four are mandatory) ?? Serve on at least one committee for the organization ?? Be willing to assist with special events at the organization, including but not limited to our Annual Symposium, Family Q&A Sessions, conference presentations, and fundraising events. ?? Apply here by Friday, November 29th: https://lnkd.in/eQws-M8R ?? the current #BoardOfDirectors at the 2024 Lafora Science Symposium. #Volunteer #NonprofitBoard #Governance #Fundraising #FightLafora #ChelseasHope #RareDiseaseAdvocacy #Nonprofit #OpenPosition

?? Apply to be the next Vice President of the Board of Directors! In the absence of the president, or in the event of their inability or refusal to act, the vice president will perform all the duties of the president, and when so acting will have all the powers of, and be subject to all the restrictions on, the president. The vice president will have other powers and perform such other duties as may be prescribed by law, by the articles of incorporation, or by the bylaws, or as may be prescribed by the Board of Directors. All members of the Board of Directors are expected to: ???? Attend the monthly board meetings (of which four are mandatory) ?? Serve on at least one committee for the organization ?? Be willing to assist with special events at the organization, including but not limited to our Annual Symposium, Family Q&A Sessions, conference presentations, and fundraising events. ?? Apply here by Friday, November 29th: https://lnkd.in/eQws-M8R ?? the current #BoardOfDirectors at the 2024 Lafora Science Symposium. #Volunteer #NonprofitBoard #Governance #Fundraising #FightLafora #ChelseasHope #RareDiseaseAdvocacy #Nonprofit #OpenPosition

?? Apply to be the next President of the Board of Directors! The president will be the chief executive officer of the corporation and will, subject to the control of the Board of Directors, supervise and control the affairs of the corporation and the activities of the officers. They will perform all duties incident to their office and such other duties as may be required by law, by the articles of incorporation, or by the bylaws, or which may be prescribed from time to time by the Board of Directors. All members of the Board of Directors are expected to: ???? Attend the monthly board meetings (of which four are mandatory) ?? Serve on at least one committee for the organization ?? Be willing to assist with special events at the organization, including but not limited to our Annual Symposium, Family Q&A Sessions, conference presentations, and fundraising events. ?? Apply here by Friday, November 29th: https://lnkd.in/eQws-M8R ?? the current #BoardOfDirectors at the 2024 Lafora Science Symposium. #Volunteer #NonprofitBoard #Governance #Fundraising #FightLafora #ChelseasHope #RareDiseaseAdvocacy #Nonprofit #OpenPosition

BID NOW: 4x VIP passes to the Broad Museum ?? Explore a dynamic collection of contemporary art: ???????? up to 4 passes 1?? visit anytime within a year of winning ?? view two of Yayoi Kusama's Infinity Mirror Rooms ?? Find more details and bid today to make a difference: https://lnkd.in/dqXwqXGw ?? Every auction item you bid on supports our efforts to cure Lafora disease. Please help us save our children! Your participation is more than an opportunity to appreciate contemporary art - it’s a chance to change the future for children fighting this rare disease. #ChelseasHopeLaforaCure #LaforaDisease #RareDiseaseAwareness #ChelseasHope #RareDisease #PatientCommunity #FightLafora #Charity #CharityAuction #SilentAuction #OnlineAuction #BroadMuseum #ArtAuction #StartBiddingNow #LaforaAuction24

People around the world ask about Angelina. Today, her mother Niki wants to share a deeply personal update. We wish that things were better, but we must warn you they aren't. Angelina was featured in a video we published in 2021 that has been seen by millions. Niki describes the progression of Ange’s dementia since then as 'gut-wrenching' and says it makes her want to fight even harder. She wants people to see the impacts of childhood dementia and fight with her too. Here's how you can help: ??DONATE to change the world for kids with dementia: https://lnkd.in/dTHAv2t ??JOIN THE MOVEMENT that’s creating change: https://lnkd.in/dCiKgFZ ??SHARE this to spread awareness Niki is fighting not just for her daughter, but for every child facing dementia. We are so proud to stand with her and we are grateful to you for your care and awareness. #childhooddementia #timeforchange #timeforaction #lafora #dementia

NOW RECRUITING! We are thrilled to share this incredible news with the Lafora community. "A Safety and Efficacy of Intrathecally Administered ION283 in Patients with Lafora Disease" is now accepting applications. ?? Find the application packet here: https://lnkd.in/e3aR5_M3 ?? Read an email from Dr. Minassian about applying here: https://lnkd.in/e4uSSzDS Our deepest gratitude goes to Dr. Minassian, Dr. Joshi, Dr. Verma, Souad Messahel, PhD, and the entire team at UTSW for making this possible. We are also thankful for Ionis' drug donation and our community's collective fundraising efforts. We can't stop now! #FightLafora #LaforaDiseaseResearch #ChelseasHopeLaforaCure #LaforaDisease #RareDiseaseAwareness #ChelseasHope #RareDisease #PatientCommunity #EpilepsyAwareness #ChildhoodDementia

As part of our holiday auction to support the ION283 safety study, we're grateful to share that you can bid on a custom portrait painting by Niki Markou ?? If you win... ?? Send Niki a photo ?? Allow 4-6 weeks for completion ?? Enjoy a custom painting handmade with love All proceeds will go to the ION283 safety study, benefitting ten patients with Lafora disease! ?? Find more details and bid today to make a difference: https://lnkd.in/dJFqJa42 Your participation is more than winning a one-of-a-kind artwork - it’s a chance to change the future for children fighting this rare disease. #ChelseasHopeLaforaCure #LaforaDisease #RareDiseaseAwareness #ChelseasHope #RareDisease #PatientCommunity #FightLafora #Charity #CharityAuction #SilentAuction #OnlineAuction #Painting #ArtworkAuction #StartBiddingNow #LaforaAuction24