Form 990 for tax year 2023

Totals

Total revenue

$1,476,365

Total expenses

$1,736,198

Contributions and grants received

$1,391,048

Grants paid

$17,000

Program service revenue

$0

Investment income

$48,778

Other revenue

$36,539

Total assets, end of year

$3,828,174

Total liabilities, end of year

$357,401

Net assets or fund balances, end of year

$3,470,773

Program services expenses (Part IX)

$1,453,045

Management and general expenses

$135,645

Fundraising expenses

$147,508

Program service expenses (Part III)

$1,453,045

Program services were 83.7% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2023

• Some activities of the organization during 2023 included the following: LE&RN continued to expand programs to meet the goals of the expanded mission of fighting lymphatic disease through education, research, and advocacy. LE&RN continued the International Lymphatic Disease and Lymphedema Registry, a national patient registry, to stimulate research and support clinical trials and drug development. LE&RN continued the International Lymphatic Disease and Lymphedema Biorepository, providing biological materials to serve as a source for the clinical and laboratory study of lymphatic diseases, and began sharing data with worldwide databases. LE&RN continued its grant program that allows young investigators to attend a conference focused on lymphatic research. LE&RN continued its educational and awareness outreach programs targeting academia, government, industry, and the medical and patient communities. LE&RN continued its monthly virtual symposium series, which brings the world's foremost authorities in lymphatic disease and lymphedema to patients, their families, and professionals. LE&RN updated its website and provided daily social media posts and monthly newsletters featuring significant events in the field. LE&RN produced six issues of Lymphatic Research and Biology, an international, peer-reviewedbiomedical journal providing a forum for the exchange of cutting-edge scientific developments in lymphatic science and medicine. LE&RN secured ongoing support from the Congressional and National Institutes of Health for lymphatic research. LE&RN continued the LE&RN/LymphNotes Lymphedema Scholarship Program to provide tuition support to therapists seeking certification in lymphedema therapy LE&RN continued a web-based "Ask the Experts" feature that allows patients, their families, and professionals to ask the most prominent authorities in the field questions directly. LE&RN spokesperson and Academy Award Winner Kathy Bates appeared in print and television media to support research. LE&RN grew its Honorary Board, headed by Kathy Bates and including notable celebrities who support LE&RN's mission. LE&RN's Virtual Expo was expanded to better serve patients and therapists. LE&RN and NAVBO prepared a biennial Virtual Lymphatic Forum for researchers LE&RN developed new chapters in several states and countries. LE&RN continued to lead global events related to its having established World Lymphedema Day on March 6, 2016. LE&RN hosted a National Action Week supporting the creation of a National Commission on Lymphatic Diseases. LE&RN supported and grew its program, creating the first-ever Centers of Excellence in the Diagnosis & Treatment of Lymphatic Diseases. LE&RN, in collaboration with Stanford University, hosted the annual virtual State-of-the-Art Summit in Lymphatic Research & Medicine. LE&RN promoted its authored New York State bill that mandates hospital institutions to provide lymphedema materials to all at-risk patients. LE&RN promoted its PSA video featuring National Spokesperson Kathy Bates, hosted on the Centers for Disease Control and Prevention (CDC) cancer-related websites. LE&RN continued its cancer-related lymphedema campaign funded by a grant from the CDC Chronic Disease Awareness Grants program. Stavros Niarchos Foundation continued its LE&RN grant to fund its Centers of Excellence program. LE&RN succeeded in its efforts to have the Congressionally Directed Medical Research Program (CDMRP) include lymphedema and lymphatic diseases as categories in the Department of Defense's Peer Reviewed Medical Research Program (PRMRP). LE&RN succeeded in its efforts to have Congress request that the National Institutes of Health (NIH) establish a National Commission on Lymphatic Diseases. LE&RN established a global Patient Resource Center. LE&RN expanded and updated its Global Patient Registry. LE&RN created the CDC's first National Indicator Report on Cancer-Related lymphedema. LE&RN successfully advocated for a Program Manager in Lymphatics at the Advanced Research Agency for Health (ARPA-H) LE&RN created a "Gaps in Lymphatic Research" document in concert with the research community, distributed to NIH, CDC, ARPA-H, CDMRP, NNLBI, and NIAID.

  Expenses $1,453,045 · Grants $17,000 · Revenue $1,427,587

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

• JOSEPH DAYAN MD

  DIRECTOR

  Total calculated

  $0

  Hours/week

  1

• DORON ILAN MD

  DIRECTOR

  Total calculated

  $0

  Hours/week

  1

• DAVE MCDOWELL

  CHAIRPERSON

  Total calculated

  $0

  Hours/week

  10

• RICK PETTY

  DIRECTOR

  Total calculated

  $0

  Hours/week

  1

• DEBBIE MILES

  TREASURER

  Total calculated

  $0

  Hours/week

  1

• MELISSA ALDRICH PHD

  SECRETARY

  Total calculated

  $0

  Hours/week

  1

• WILLIAM REPICCI

  PRESIDENT & CEO

  Total calculated

  $321,599

  From this org

  $272,415

  From related orgs

  $0

  Other

  $49,184

  Hours/week

  40

  Schedule J breakdown matched by us

  Base

  $272,415

  Bonus

  $0

  Other

  $0

  Deferred

  $30,000

  Nontaxable benefits

  $19,184

  Filer's total

  $321,599

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type

form_990

Tax year

2023

Filed

23 April 2024

IRS schema version

2023v5.0

Source object

202441149349300524

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