Kim what party are they Parlimentary Rules state if a member of the ruling party/parties they are required to take up your concerns with the approriate minister.
Perhaps a gentle message suggesting your e-mail may have been mislaid as you cannot imagine them not wanting to be involved in getting help for 480,00 sufferers of the worlds most painful incurable condition, one which they or their family could become victims of from something as simple as a twisted ankle or sprained wrist.