Everylife Foundation for Rare Diseases
Registered Principal Details
Business Or Interest:
Advancing newborn screening issues
Lobbying Interests:
Advancing newborn screening issues in the State.
Advancing newborn screening issues
Lobbying Interests:
Advancing newborn screening issues in the State.
Contact
DS
Dylan Simon
1012 14th NW, Suite 500
Washington , DC 20005
202-697-7273
dsimon@everylifefoundation.org
http://everylifefoundation.org
1012 14th NW, Suite 500
Washington , DC 20005
202-697-7273
dsimon@everylifefoundation.org
http://everylifefoundation.org
Authorized Lobbyists
| Lobbyist Name | Exclusive Duties | Authorized On | Withdrawn On |
|---|
Lobbying Interests
Legislative Bills/Resolutions
Assembly Bill 206
Relating to: the procedure for adding federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. (FE)
Bill Text and History
5/7/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Relating to: the procedure for adding federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. (FE)
Bill Text and History
For
Notification Date5/7/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Senate Bill 145
Relating to: the procedure for adding federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. (FE)
Bill Text and History
3/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Relating to: the procedure for adding federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. (FE)
Bill Text and History
For
Notification Date3/24/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal has not yet communicated on this matter, but intends to do so at a later date.
Topics Not Yet Assigned A Bill Or Rule Number
Development, drafting or introduction of a proposal relating to
Newborn Screening Program
Newborn Screening Program
Action Intended To Affect
Both Legislative matter and rule
Notification Date
1/8/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Both Legislative matter and rule
Notification Date
1/8/2025
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Total Lobbying Effort
| 2025 January - June |
Total | |
|---|---|---|
| Total Lobbying Expenditures | 2025 January - June $30,925.00 |
Total $30,925.00 |
| Total Hours Communicating | 2025 January - June 9.00 |
Total 9.00 |
| Total Hours Other | 2025 January - June 51.25 |
Total 51.25 |
Percent Allocation of Lobbying Effort
Legislative Bills/Resolutions
Relating to: the procedure for adding federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. (FE)
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 40% |
2025 July - December |
2026 January - June |
2026 July - December |
Total 40% |
Relating to: the procedure for adding federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. (FE)
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 40% |
2025 July - December |
2026 January - June |
2026 July - December |
Total 40% |
Budget Bill Subjects
No budget bill subjects found.
Administrative Rulemaking Proceedings
No administrative rulemaking proceedings found.
Topics Not Yet Assigned A Bill Or Rule Number
| 2025 January - June |
2025 July - December |
2026 January - June |
2026 July - December |
Total |
|---|---|---|---|---|
| 2025 January - June 20% |
2025 July - December |
2026 January - June |
2026 July - December |
Total 20% |
Minor Efforts
No minor efforts found.
Other Matters
No other matters found.