Following the heartbreaking loss of their daughter, Alissa and Curt Johnson established The Louisa Adelynn Johnson Fund For Complex Disease to support the efforts of researchers studying the conditions from which Louisa suffered, including dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), neuroimmune disease and other comorbidities. At the age of 11, complex, chronic illness dramatically altered the life of Louisa, known affectionately as "Lulu" to friends and family, overnight. Despite considerable resources including medical professionals within her extended family, she endured a horrific medical journey for two and a half years before her death that no person, least of all a child, should experience.
Lulu had a passion for learning, particularly creative writing, math and science. She had many interests and talents, including dancing, singing, songwriting, music, theater, and caring for her beloved dogs (Mattie and May). She shared a remarkable closeness with her older brother Nate, and Nate's friendship along with her dogs brought her comfort through life and during her battle with chronic illness. Lulu exhibited an incredible drive to learn more about the world around her, and she aspired to become a physician and advocate for patients like herself.
Through The Louisa Adelynn Johnson Fund for Complex Disease, we hope to advocate on Lulu's behalf and help to advance scientific research and, in turn, the medical community's understanding of complex disease. With your support, the fund will provide grants to conduct vital research studies at major academic institutions currently investigating these conditions. Research projects on such complex conditions often is underfunded or, as in the case of the inflammatory brain disorders PANS and PANDAS, annually receive no to very minimal federal funding--a major source of support for scientific research in the United States. Your contribution will pave the way toward better treatments and quality of life for children like Lulu.
JUNE 2023: The Louisa Adelynn Johnson Fund for Complex Disease is pleased to announce its partnership with the Neuroimmune Foundation to fund the first year of a fellowship at UCSF. Dr. Greer Waldrop will begin next week using the Neuroinflammatory Diseases Cohort at UCSF (currently >2500 patients) to identify shared clinical features and outcomes related factors in this large cohort of patients with encephalitis, meningitis and post-infectious neuroinflammation. The cohort, under collection at UCSF for 10 years since it was started by Dr. Michael Wilson and Dr. Joseph DeRisi, includes many groups of patients with autoimmune encephalitis, infectious meningoencephalitis, paraneoplastic neurologic disorders and post-infectious neuroinflammation. The cohort also is comprised of many sub-cohorts of patients with specific underlying disorders that predispose to neuroinflammation. Dr. Waldrop will utilize her extensive epidemiologic and clinical expertise to identify features that are critically associated with outcomes, responses to therapy and underlying etiology.
FEBRUARY 2023: The Louisa Adelynn Johnson Fund for Complex Disease awarded its first grant of $92, 500 to Stanford's Immune Behavioral Health Clinic. Researchers will utilize the funds to initiate studies on siblings of PANS cases, with a portion having POTS. Both disorders profoundly affected Louisa’s quality of life, and she would be very grateful to our generous donors as are we.
Your donation will support critical scientific research studies to improve the lives of children and families affected by complex illness. For online donations using a credit card, please click on the button below. Any donation amount is much appreciated and will help further scientists understanding of diseases from which Lulu suffered and, ultimately, the treatments available to patients.
Charities Aid Foundation of (CAF) America (EIN: 43-1634280), which is a 501 (c) (3) public charity, manages the fund, and all donations to CAF America are tax deductible.
If you wish to make an online credit card donation, please NOTE that due to anti-fraud measures the spelling of the name and address for your credit card billing must be exactly as it appears on your statements in order for the transaction to be processed. If your transaction is denied, please check that the spelling is correct, including abbreviations. For example, St. may need to be written out as Street if that is how it appears on your statement.
For donations via check, wire transfer, stock transfer or credit card (offline), please click on the button below to download a donor gift form. Gift forms must accompany offline donations due to anti-money laundering policies. Please email completed gift forms to CAF America's Private Client Team at email@example.com or send by mail to CAF America, 225 Reinekers Lane Suite 375, Alexandria, VA 22314.
Please contact firstname.lastname@example.org for details concerning transfers or any other questions. Thank you for your generosity.
How will CAF America, the managers of the fund, utilize my contribution?
The assets making up the fund shall be used only for charitable purposes within the scope of CAF America’s mission, either directly or by distributions to other charitable organizations having the status of a public charity (as described in Sections 501(c)(3) and 170(b)(1)(A) of the Internal Revenue Code of 1986) or private operating foundation (as described in Section 4942(j)(3) of the Code), or any entity that meets the requirements as described in 2.A. of the CAF America's Donor Advised Fund Policies. The Fund shall at all times be the property of CAF America held by it in its normal corporate capacity.
Advisors to The Louisa Adelynn Johnson Fund for Complex Disease, including Alissa and Curt Johnson, will submit recommendations for grant awards solely for the purpose of supporting scientific research studies.
Are there any fees associated with my contribution?
Donations to the fund are not assessed a fee at the time of donation. When fund advisors subsequently grant funds to support scientific research projects , the following charges apply as grants are awarded.
Grantmaking to eligible U.S. organizations:
- 3% of the first $500,000 granted in a given calendar year;
- 1.5% of the next $500,000 granted in a given calendar year;
- 0.6% of the next $2,000,000 granted in a given calendar year;
- 0.3% of any additional amount granted in a given calendar year.
Grantmaking to eligible international organizations: Amounts to
international organizations are aggregated annually on a calendar year, separate from U.S. grants.
- 5% of the first $500,000 granted in a given calendar year;
- 3% of the next $500,000 granted in a given calendar year;
- 1% of the next $2,000,000 granted in a given calendar year;
- 0.5% of any additional amount granted in a given calendar year.
Who should I contact with questions about the fund?
Please contact Alissa Johnson at email@example.com or 202-258-5529.
Where can I learn more about dysautonomia/POTS and neuroimmune disease?