2023-04-05-accounts

Trust	ees' Annual Report	ees' Annual Report	ees' Annual Report	ees' Annual Report	for theperiod	for theperiod	for theperiod
From	Period start date			To	Period end date
	1st	April	2022		31	March	2023

Trustees' Annual Report for the period

From To

Section A Reference and administration details

Charity name Other names charity is known by	TREATSMA

Registered charity number (if any)[1182610]

Charity's principal address 85 Great Portland Street First Floor London Postcode W1W 7LT

Names of the charity trustees who manage the charity

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20	Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
	GENNADIY ILYASHENKO
	JOSEPH IRWIN		Resigned November 22
	LUCY FROST
	ANDI THORNTON
	KELLY JONES		Resigned November 22
	Names of the trustees for the charity, if any, (for example, any custodian trustees)
	Name		Dates acted if not for whole year

March 2012

TAR

1

Names and addresses of advisers (Optional information)

Type of adviser	Name Address	Name Address
Name of chief executive	or names of senior staff members (Optional information)

Section B Structure, governance and management

Description of the charity’s trusts

Constitution Type of governing document (eg. trust deed, constitution) CIO How the charity is constituted (eg. trust, association, company) Elected by other trustees Trustee selection methods (eg. appointed by, elected by)

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

• policies and procedures adopted for the induction and training of trustees;

• the charity’s organisational structure and any wider network with which the charity works;

• relationship with any related parties;

• trustees’ consideration of major risks and the system and procedures to manage them.

Section C Objectives and activities

March 2012

TAR

2

Summary of the objects of the charity set out in its governing document Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)	We do everything possible to ensure that all people with SMA have access to effective treatments, health care and social support. We raise awareness of the disease, offer support to those affected and their near and dear ones, promote and support scientific research into causes and treatments, and provide necessary equipment and living aids.
	 Campaigned for access to treatment of Spinraza, Risdiplam and Zolgensma.  Worked on Managed Access Program for Spinraza and Risdiplam together with NHSE and NICE.  Worked with pharmaceutical companies and regulatory agencies to further knowledge and support the introduction of further treatments  Collaborated with SMA Reach, SMA Reach Adults and other Networks.  Ran number of educational webinars for those with and affected by SMA to help support them on key topics such as: o Physiotherapy o Respiratory care o Standards of care  Provided support to families either by email or telephone as and when required  Continued fundraising to further our goals

Additional details of objectives and activities (Optional information)

March 2012

TAR

3

You may choose to include further statements, where relevant, about:

• policy on grantmaking;

• policy programme related investment;

• contribution made by volunteers.

Section D Achievements and performance

March 2012

TAR

4

Section D Achievements and performance

• We continue to represent families with SMA in various

• Summary of the main technical processes.

• achievements of the charity ~~~~ Represent families for MHRA re-assessment of gene therapy during the year for SMA

• We continue to participate in oversight committees for Managed Access Agreement for Spinraza and Risdiplam.

• We have had a program of adult and children focused physiotherapy webinars hosted by physio Marion Main.

• We have offered a 24hr support and helpdesk service  SMA Awareness Month where we posted daily infographics and posted videos from community members.

• We continued to put our surveys and collection of data to submit for various appraisals

• We continue to advocate for patients who do not have access to treatments or who wish to access additional clinical trials.

• Amongst other things we now also engaged into new-born screening topics to ensure that families get diagnosis quickly and access treatments much faster.

• Written letters of support for community members for various issues

Section E Financial review

March 2012

TAR

5

Reserves are carried through to next financial year to support further Brief statement of the advancements in support for the SME community. charity’s policy on reserves

Details of any funds materially in deficit

N/A

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

The charity’s principal sources of funding is exclusively fundraising and generous donations by individuals. All expenditure is used to support the community and tools required to do so. No money is used in any way as renumeration of the trustees.

• the charity’s principal sources of funds (including any fundraising);

• how expenditure has supported the key objectives of the charity;

• investment policy and objectives including any ethical investment policy adopted.

Section F Other optional information

Section G Declaration

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Full name(s) Dr Gennadiy Ilyashenko Trustee Position (eg Secretary, Chair, etc) Date 20/02/24

March 2012

TAR

6

TAR March 2012

TreatSMA ACCOUNTS 2022-2023

Type of activity	Money In	Money Out
Opening balance	19,676.78
Donation: Direct Credit From Amazon Europe Core		38.56
Donation: AFTS Receipt From Bank Leumi UK	15,163.00
Donation: Direct Credit From Amazon Europe Core		33.21
Donation: Direct Credit From Amazon Europe Core		25.96
Donation via PayPal: Direct Credit From Paypal	2,457.23
Donation: Direct Credit From Amazon Europe Core		27.83
Donations: From L Harris		614
Expenses: Reimburmenst to Lucy Frost		204
Expenses: Reimburmenst to Gennadiy Ilyashenko		171.25
Total End of Year Balance	38,036.57 375.25 37,661.32