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| Lobbyist Name | Exclusive Duties | Authorized On | Withdrawn On |
|---|---|---|---|
| Bryan Brooks | Exclusive Duties No | Authorized On 1/5/2023 | Withdrawn On N/A |
| Jeff M Fitzgerald | Exclusive Duties No | Authorized On 1/5/2023 | Withdrawn On N/A |
| Savannah Sepic | Exclusive Duties No | Authorized On 1/5/2023 | Withdrawn On N/A |
Lobbying Interests
Legislative Bills/Resolutions
Assembly Bill 1057
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
2/6/2024
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 Date2/6/2024
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 962
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
1/30/2024
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 Date1/30/2024
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.
Budget Bill Subjects
Biennial budget bill treatment of matter relating to
Health Services: Departmentwide
Health Services: Departmentwide
Notification Date
4/27/2023
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.
4/27/2023
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.
Biennial budget bill treatment of matter relating to
University of Wisconsin System
University of Wisconsin System
Notification Date
4/27/2023
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.
4/27/2023
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.
Administrative Rulemaking Proceedings
Agency Name
Department of Health Services (DHS)
Subject
Screening of newborns for congenital disorders
Scope Statement
SS 056_23
8/8/2023
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.
Comments
Rule should require the Department to consider future rare diseases in a time-certain period (2-3 years) and require a vote be taken to add all future rare diseases that have been added to the Federal register of rare diseases.
Department of Health Services (DHS)
Subject
Screening of newborns for congenital disorders
Scope Statement
SS 056_23
Other
Notification Date8/8/2023
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.
Comments
Rule should require the Department to consider future rare diseases in a time-certain period (2-3 years) and require a vote be taken to add all future rare diseases that have been added to the Federal register of rare diseases.
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
1/17/2023
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.
Both Legislative matter and rule
Notification Date
1/17/2023
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.
Total Lobbying Effort
| 2023 January - June |
2023 July - December |
2024 January - June |
Total | |
|---|---|---|---|---|
| Total Lobbying Expenditures | 2023 January - June $0.00 |
2023 July - December $16,138.00 |
2024 January - June $26,150.00 |
Total $42,288.00 |
| Total Hours Communicating | 2023 January - June 30.50 |
2023 July - December 8.00 |
2024 January - June 14.50 |
Total 53.00 |
| Total Hours Other | 2023 January - June 45.25 |
2023 July - December 27.50 |
2024 January - June 29.50 |
Total 102.25 |
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)
| 2023 January - June |
2023 July - December |
2024 January - June |
2024 July - December |
Total |
|---|---|---|---|---|
| 2023 January - June |
2023 July - December |
2024 January - June 40% |
2024 July - December |
Total 12% |
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)
| 2023 January - June |
2023 July - December |
2024 January - June |
2024 July - December |
Total |
|---|---|---|---|---|
| 2023 January - June |
2023 July - December |
2024 January - June 40% |
2024 July - December |
Total 12% |
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
| 2023 January - June |
2023 July - December |
2024 January - June |
2024 July - December |
Total |
|---|---|---|---|---|
| 2023 January - June |
2023 July - December 100% |
2024 January - June 20% |
2024 July - December |
Total 29% |
Minor Efforts
No minor efforts found.
Other Matters
No other matters found.