The Louisa Adelynn Johnson Fund for Complex Disease provides funding to aid scientific research endeavors.
OUR STORY
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. 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, receive limited 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.
WALK A MILE IN YOUR SHOES FOR LULU!
Helps us raise awareness about infection-associated chronic conditions and illnesses PANS, PANDAS and POTS. Participate any time during the month of October at your convenience or walk on the official awareness days for PANS/PANDAS (Oct. 9th) or POTS (Oct. 25th). Walk a mile solo or grab a group of friends.
WALKING FOR LULU PLAYLIST
Need some tunes for your stroll? Access a Spotify playlist of songs from Lulu's record collection, which she started just six months before her passing in 2021.
SEND US YOUR SELFIES WHILE ON YOUR WALK
We will feature them on our website and on social media. And tag #walkingforlulu when you share on social media. Thank you for spreading the word about these devastating and life altering conditions. Your efforts will help to pave the way for better care and treatment of patients like Lulu. To learn more about PANS and PANDAS, please visit the Neuroimmune Foundation. For more information about POTS and other forms of dysautonomia, please visit Dysautonomia International.
CARE TO DONATE?
Participation in our virtual walk is free. If you would like to make a donation to support the work of Lulu's fund, and in honor of our virtual walk and PANS/PANDAS and POTS awareness days, please click on the button below. Every dollar counts and will help us to continue to support the vital work of researchers investigating complex, chronic illness. Thank you!
PLEASE SUPPORT OUR EFFORTS
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 our donor advised fund (DAF), and all donations to CAF America are tax deductible.
PREFER TO DONATE OFFLINE?
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 privateclients@cafamerica.org or send by mail to CAF America, 225 Reinekers Lane Suite 375, Alexandria, VA 22314.
Please note: Qualified Charitable Donations (QCD)s from Individual Retirement Account (IRA)s are NOT eligible for donation to the fund, since it is a DAF. While the sponsoring organization CAF America for our DAF is a 501(c)(3), CAF America cannot distribute QCDs to our fund.
Please contact ajohnson@policyconsult.com or 202-258-5529 for details concerning transfers or any other questions. Thank you for your generosity.
NOTE: If you wish to make an online credit card donation, please know 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. Rarely but on occasion a transaction is denied for this reason. If that occurs, 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.