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      <title>MDUK SOUTH ASIAN NEUROMUSCULAR NETWORK💪 by Diya</title>
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      <description>A safe space for our community to share their lived experiences of living with or caring for someone who has a muscle wasting condition!</description>
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      <pubDate>2025-03-26 18:35:08 UTC</pubDate>
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         <pubDate>2025-03-26 18:49:55 UTC</pubDate>
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         <pubDate>2025-03-26 18:54:11 UTC</pubDate>
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         <pubDate>2025-03-26 19:01:27 UTC</pubDate>
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         <pubDate>2025-03-26 20:11:18 UTC</pubDate>
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         <pubDate>2025-03-26 20:14:17 UTC</pubDate>
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         <pubDate>2025-03-26 20:19:57 UTC</pubDate>
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         <title></title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383806873</link>
         <description><![CDATA[]]></description>
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         <pubDate>2025-03-26 20:22:24 UTC</pubDate>
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         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383811628</link>
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         <pubDate>2025-03-26 20:27:35 UTC</pubDate>
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         <title>Addressing Barriers for Tourists with Physical Disabilities Engaging in Retail Activities. Case Study: Ashford Designer Outlet </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383822484</link>
         <description><![CDATA[<p>A 1st Class undergraduate independent dissertation research study which identifies gaps in accessibility barriers to physically disabled visitors engaging in retail tourism, Investigates enablers to minimise access barriers within shopping centres for visitors with physical disabilities and provides an overall strategy in which shopping centre staff can use to create a more accessible environment for physically disabled visitors.</p>]]></description>
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         <pubDate>2025-03-26 20:41:13 UTC</pubDate>
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         <title>Registering/Ending a Lasting Power of Attorney</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383837668</link>
         <description><![CDATA[<p>The Government site for Lasting Power of Attorney. Two separate ones for financial and medical. There is an £82 fee per LPA but requires no solicitors.</p>]]></description>
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         <pubDate>2025-03-26 21:01:52 UTC</pubDate>
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         <title>Free Will Writing Service </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383839307</link>
         <description><![CDATA[<p>We talked about wills. This is the free will site my dad used. No solicitor needed for it to be legally binding.</p>]]></description>
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         <pubDate>2025-03-26 21:04:03 UTC</pubDate>
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         <title>Cost of Cuts to Disability Benefits </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383842727</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.scope.org.uk/campaigns/open-letter-to-the-chancellor-the-cost-of-cuts-to-disability-benefits" />
         <pubDate>2025-03-26 21:08:11 UTC</pubDate>
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         <title>Proposed welfare reforms and benefits cuts</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383843093</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.musculardystrophyuk.org/news/benefits-cuts-what-do-we-know/" />
         <pubDate>2025-03-26 21:08:57 UTC</pubDate>
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      <item>
         <title>Muscles Matter Podcast Launch </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383845240</link>
         <description><![CDATA[<p><br></p><p><a rel="noopener noreferrer nofollow" href="https://www.facebook.com/musculardystrophyUK"><strong>https://www.facebook.com/musculardystrophyUK</strong></a></p><p><br></p><p><a rel="noopener noreferrer nofollow" href="https://x.com/mduk_news?lang=en"><strong>https://x.com/mduk_news?lang=en</strong></a></p><p><br></p><p><a rel="noopener noreferrer nofollow" href="https://www.musculardystrophyuk.org"><strong>https://www.musculardystrophyuk.org</strong></a></p><p><br></p><p><a rel="noopener noreferrer nofollow" href="https://www.linkedin.com/company/musculardystrophyuk/"><strong>https://www.linkedin.com/company/musculardystrophyuk/</strong></a></p><p><br></p><p><br></p>]]></description>
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         <pubDate>2025-03-26 21:11:53 UTC</pubDate>
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         <title>Cheap and Free Wills</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383891905</link>
         <description><![CDATA[<p>This website by Martin Lewis is good!</p><p><br/></p><p><strong>Martin Lewis' programme about wills etc. (11.03.2025)</strong></p><p><a rel="noopener noreferrer nofollow" href="https://www.itv.com/watch/the-martin-lewis-money-show-live/2a1827/2a1827a0169">https://www.itv.com/watch/the-martin-lewis-money-show-live/2a1827/2a1827a0169</a></p>]]></description>
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         <pubDate>2025-03-26 22:22:40 UTC</pubDate>
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         <title>Free Wills Month</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3383894707</link>
         <description><![CDATA[<p>It is possible to get free wills done via a solicitor. This is what Priyaneet mentioned earlier (on call) where a donation to a charity is made. </p><p><br></p><p>Free Wills Months for these are March and October.  </p>]]></description>
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         <pubDate>2025-03-26 22:26:31 UTC</pubDate>
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         <title></title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3389867862</link>
         <description><![CDATA[]]></description>
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         <pubDate>2025-03-31 21:19:06 UTC</pubDate>
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         <title>**South Asian Neuromuscular Network Consent Form**</title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3389869118</link>
         <description><![CDATA[<p>This form is required to be filled out so we have permission to update members about what is happening in the network! If you are new to the network, please fill the form out and let us know when this is completed and we can then include you in our update distributions📡</p>]]></description>
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         <pubDate>2025-03-31 21:20:57 UTC</pubDate>
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         <title>MDUK Employability Service </title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3389871477</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.musculardystrophyuk.org/support/services/employability-service/" />
         <pubDate>2025-03-31 21:25:11 UTC</pubDate>
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         <title>Volunteering Opportunities</title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3389877652</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.musculardystrophyuk.org/get-involved/volunteering/" />
         <pubDate>2025-03-31 21:34:45 UTC</pubDate>
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         <title>Current MDUK Vacancies</title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3389879175</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.musculardystrophyuk.org/about-us/work-for-us/join-our-team/" />
         <pubDate>2025-03-31 21:37:00 UTC</pubDate>
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         <title>Access To Work </title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3389885014</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.gov.uk/access-to-work" />
         <pubDate>2025-03-31 21:46:19 UTC</pubDate>
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      <item>
         <title>OUR GROUP PADLET</title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3395033974</link>
         <description><![CDATA[]]></description>
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         <pubDate>2025-04-03 20:51:12 UTC</pubDate>
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         <title>MEETING 1: 16.04.2025 @ 5pm</title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3401496725</link>
         <description><![CDATA[<p>Our first meeting will be held on Wednesday 16th April 2025 between 5pm and 6pm via MSTeams. Please see agenda for what to expect! We look forward to seeing you there! If you cannot attend or missed our meeting,  agenda of what we worked through will be available on the shared folder. Any questions, please do not hesitate to ask and we will do our utmost best to help!</p><p><br/></p><p>Here is the link to join the Teams Meeting:&nbsp;</p><p><a rel="noopener noreferrer nofollow" href="https://teams.microsoft.com/meet/398633470118?p=PwCVEl8RBvrsNcG81B">https://teams.microsoft.com/meet/398633470118?p=PwCVEl8RBvrsNcG81B</a></p><p><br/></p><p>Meeting ID: 398633470118</p><p>Passcode: fm2Ro3iP</p><p><br/></p><p><br/></p>]]></description>
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         <pubDate>2025-04-09 00:03:17 UTC</pubDate>
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         <title>Financial Support</title>
         <author>ds836</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3412726827</link>
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         <pubDate>2025-04-16 17:01:08 UTC</pubDate>
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         <title>Adapted cycling</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3413815533</link>
         <description><![CDATA[<p>This is a national charity which offers adapted cycling for individuals (solo bikes) and their carers (tandem bikes).  Great for wheelchair users too.  There is a great selection of 3-wheeler and 4-wheeler bikes and cost is approx. £5 per session with carers going free.</p>]]></description>
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         <pubDate>2025-04-17 09:45:05 UTC</pubDate>
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         <title>Purpl discount scheme</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3413817421</link>
         <description><![CDATA[<p>Sign up to this disability discount scheme for great offers such as 10% off a Morrisons home delivery shop when you spend just £25 plus many more.....</p>]]></description>
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         <pubDate>2025-04-17 09:47:36 UTC</pubDate>
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         <title>CEA card</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3413826956</link>
         <description><![CDATA[<p>Cinema discount card allowing carers to go free.</p>]]></description>
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         <pubDate>2025-04-17 10:01:16 UTC</pubDate>
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         <title>Access Card</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3413830079</link>
         <description><![CDATA[<p>This discount card is widely accepted in theatres, stadiums, concert venues, parks &amp; gardens, etc..... allowing carers to go free.  Plus, you can also be fast-tracked into places which is very helpful.</p>]]></description>
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         <pubDate>2025-04-17 10:05:23 UTC</pubDate>
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         <title>UK wheelchair/mobility scooter hire</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3413834105</link>
         <description><![CDATA[<p>A good cost-effective option for short-term hire of wheelchairs/mobility scooters for travel within the UK, e.g. from a day to a week (and maybe even longer) and from as little as £5 a day.  Plus, you can also get some accessories for free when you hire, e.g. poncho, crutch bag, etc.....  I tend to hire the same boot scooter from my local Shopmobility when going away in the UK. </p>]]></description>
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         <pubDate>2025-04-17 10:10:33 UTC</pubDate>
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         <title>Cruises</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3413850144</link>
         <description><![CDATA[<p>I did my first ever cruise in May 2023 - from Southampton to Norwegian Fjords for 7 nights.  It was amazing.  We sailed on the MSC Virtuosa which holds approx. 6,000 people!  It was huge and very blingy, e.g. swarovski crystal staircase (that I couldn't use - lol) and even had a robotic bartender serving cocktails.  Cruising really is for everyone.</p>]]></description>
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         <pubDate>2025-04-17 10:31:42 UTC</pubDate>
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         <title>Blue Sky Card </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3415246752</link>
         <description><![CDATA[<p>Fully vetted Social Care ID Card that doubles as a discounts/perks card, recognised nationally, accepted on the High street and online.</p><p><br/></p><p>For paid and unpaid PA's as well as anyone who employs PA's.</p>]]></description>
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         <pubDate>2025-04-18 17:35:26 UTC</pubDate>
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         <title></title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3415252160</link>
         <description><![CDATA[<p>Carers card</p><p><br/></p><p>PA's/carers, paid and unpaid, are eligible for this card. Variety of discounts available in shops online and also on days out at attractions. Includes an app providing access to various resources such as a Wellbeing Hub, personal support and guidance on setting up a carers emergency plan. Card costs £8 for 2 years.</p>]]></description>
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         <pubDate>2025-04-18 17:46:48 UTC</pubDate>
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         <title>Protein no-bake flapjacks</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3415267221</link>
         <description><![CDATA[<p><strong>Ingredients</strong> </p><p>200g oats </p><p>170g almond butter</p><p>170g honey</p><p>approx 4 tbsp milk  </p><p>2 tbsp protein powder  </p><p>2 tbsp ground flaxseeds</p><p>2 tbsp ground pumpkin seeds </p><p>2 tbsp ground sunflower seeds </p><p>1/2 tsp cinnamon </p><p>1/2 tsp sea salt</p><p><br></p><p><strong>Method</strong> </p><p>1. Line a square 20cm baking tin with baking paper </p><p>2. Melt the almond butter, honey and milk in a pan until smooth.</p><p>3. Take off the heat and mix in the oats, protein powder, flaxseeds, pumpkin seeds, sunflower seeds, cinnamon and sea salt.</p><p>4. Spoon into the tin and level. Leave for 15 minutes, then transfer to the fridge 2 hours. </p><p>5. Cut into squares. Keep in an airtight container for up to 7 days.</p>]]></description>
         <enclosure url="" />
         <pubDate>2025-04-18 18:25:21 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3415267221</guid>
      </item>
      <item>
         <title>MDUK - podcast episode 2</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3423447727</link>
         <description><![CDATA[<p>This podcast is a great listen - with tips and insights for employment, featuring our very own Diya ❤️</p>]]></description>
         <enclosure url="https://open.spotify.com/episode/0ZZSNrs5VotuiOSXrN4oFW?si=qsVTHZ3_RjCk3f9dezdMJQ" />
         <pubDate>2025-04-24 13:58:10 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3423447727</guid>
      </item>
      <item>
         <title>Smart thermostatic radiator valves</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3444013606</link>
         <description><![CDATA[<p>I have these radiator valves installed on each of my radiators, to replace the existing low-level ones which I struggled to turn.  These Danfoss Eco ones operate via Bluetooth connection to your smartphone which means you can easily operate them via an App.  </p>]]></description>
         <enclosure url="https://www.danfoss.com/en-gb/products/dhs/smart-heating/smart-heating/danfoss-eco/#tab-overview" />
         <pubDate>2025-05-09 20:40:17 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3444013606</guid>
      </item>
      <item>
         <title>MDUK podcast - episode 3</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3481453312</link>
         <description><![CDATA[<p>This podcast which talks about the mental health struggles, faced by Becca, Louise and Joe.  </p><p><br/></p><p>I found Joe really interesting and very open about his struggles and guilt as a parent, but how his creative writing has been his saviour and this is evident in the podcast.  </p><p><br/></p><p>Joe is very articulate and it's great to hear a man's perspective on living with a muscle wasting condition and his openness is commendable. He was diagnosed at just 3 years old. </p><p><br/></p><p>Please do take the time to listen to this podcast if you can.  I particularly liked the very end.  You will know what I mean......</p>]]></description>
         <enclosure url="https://open.spotify.com/show/1GngrpXKV0UbicjvA5G0xt?si=SZoqJrmMQVuzYx3lYuTrHw" />
         <pubDate>2025-06-06 13:33:06 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3481453312</guid>
      </item>
      <item>
         <title>MDUK - therapeutic support group (sign up)</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3481458396</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://www.musculardystrophyuk.org/support/services/support-groups/virtual-therapeutic-support-group/" />
         <pubDate>2025-06-06 13:38:54 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3481458396</guid>
      </item>
      <item>
         <title></title>
         <author>TahirahP</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3483796334</link>
         <description><![CDATA[<p>Great team workshop idea….chocolate making workshop</p><p>I recently went to Cocoa Amore in Leicester and made a Dubai style chocolate bar. 1 hour 45 mins workshop with a break for hot drink.</p><p>Unfortunately the workshop in Leicester city centre was not accessible as it was held upstairs and no lift.</p><p>However definitely a fun workshop which held about 9 people.</p><p><br></p>]]></description>
         <enclosure url="" />
         <pubDate>2025-06-09 19:07:08 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3483796334</guid>
      </item>
      <item>
         <title>Accessible horse riding </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3486882753</link>
         <description><![CDATA[<p>I went to the Scropton Horse Centre in Derby a few years ago who offer lots of activities including horse riding for people of all different abilities.</p><p>I did a horse and cart ride - the cart is adapted with a ramp at the back and there are clamps to hold the wheelchair. (It has to be a manual wheelchair as power chairs are too heavy).</p><p>The instructor sat next to me and was telling me how  to use the reins.  It was amazing !!!  I would highly recommend it.</p><p><br/></p>]]></description>
         <enclosure url="https://www.scropton.com/?fbclid=IwY2xjawK2hftleHRuA2FlbQIxMQABHqbL6KSRBAEMW4ZtEqsOjPnlEFJIc48WwASTko1aWPpnNufdQD-7-5WCnWmJ_aem_CgciuH3CjQMn" />
         <pubDate>2025-06-11 16:09:03 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3486882753</guid>
      </item>
      <item>
         <title>Mosaic Art Workshops </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3494669528</link>
         <description><![CDATA[<p>Mosaic art workshops - creative and fun group activity. </p><p><br/></p><p>Studios in Birmingham, Leeds, Leicester, Coventry, Liverpool, Manchester, Nottingham, London, Milton Keynes.</p><p><br/></p><p>They also do private group events, either at one of their studios or a venue of ours.</p><p><br/></p><p><br/></p>]]></description>
         <enclosure url="https://ml.mosaicartstudio.uk/" />
         <pubDate>2025-06-18 13:22:09 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3494669528</guid>
      </item>
      <item>
         <title>Sip &#39;n&#39; Stroke </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3509643516</link>
         <description><![CDATA[<p>Paint party events with instructors, live DJ music, food and drinks. All art materials provided.</p><p><br/></p><p>Join a general event, or book a private group party.</p><p><br/></p><p>Locations in London and Birmingham.</p><p><br/></p><p><br/></p>]]></description>
         <enclosure url="https://www.sipnstroke.com/" />
         <pubDate>2025-07-03 12:37:55 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3509643516</guid>
      </item>
      <item>
         <title>Funky aids and adaptive products for adults and children</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3525296422</link>
         <description><![CDATA[]]></description>
         <enclosure url="https://nevergrey.shop/" />
         <pubDate>2025-07-21 21:48:24 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3525296422</guid>
      </item>
      <item>
         <title>Free hydrotherapy sessions in the South of England - especially if you have Limb Girdle Type 2a.</title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3525859054</link>
         <description><![CDATA[<p>This charity was set up by Andy Barwell, who has Muscular Dystrophy, in 2022.</p>]]></description>
         <enclosure url="https://www.hydromuscles.com/" />
         <pubDate>2025-07-22 07:44:10 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3525859054</guid>
      </item>
      <item>
         <title>Personal Safety Awareness Guide </title>
         <author></author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3670319545</link>
         <description><![CDATA[<p>Punjabi and English </p>]]></description>
         <enclosure url="https://padlet-uploads-usc1.storage.googleapis.com/4696181537/7f5cd7c0ff98e2e5fb3eff7d1dc5a35f/Personal_Safety_Awareness___Digital.pdf" />
         <pubDate>2025-11-06 16:12:05 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3670319545</guid>
      </item>
      <item>
         <title>SLOGANS FOR LOGO </title>
         <author>diyasharma3041</author>
         <link>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3699698087</link>
         <description><![CDATA[<p>Please Put Your SANMN Slogan Ideas Below! The winner will be announced via a poll at the end of December!</p><p><br></p><p>Thank You🙏</p>]]></description>
         <enclosure url="" />
         <pubDate>2025-11-26 14:40:51 UTC</pubDate>
         <guid>https://padlet.com/diyasharma3041/MDUKsanmn/wish/3699698087</guid>
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